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• Review Article
• Published: 06 October 2020

Fibromyalgia: an update on clinical characteristics, aetiopathogenesis and treatment

• Piercarlo Sarzi-Puttini   ORCID: orcid.org/0000-0002-8673-5133 1 ,
• Valeria Giorgi   ORCID: orcid.org/0000-0003-0369-1700 1 ,
• Daniela Marotto   ORCID: orcid.org/0000-0003-3255-3307 2 &
• Fabiola Atzeni 3  

Nature Reviews Rheumatology volume  16 ,  pages 645–660 ( 2020 ) Cite this article

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• Fibromyalgia
• Rheumatology

Fibromyalgia is characterized by chronic widespread pain, fatigue, sleep disturbances and functional symptoms. The etiopathogenesis, diagnostic criteria and classification criteria of fibromyalgia are still debated and, consequently, so are the strategies for treating this condition. Fibromyalgia is the third most frequent musculoskeletal condition, and its prevalence increases with age. However, although diagnosis has improved with the evolution of more accurate diagnostic criteria, a considerable proportion of physicians still fail to recognize the syndrome. Many factors contribute to the development of fibromyalgia in a unique manner: genetic predisposition, personal experiences, emotional–cognitive factors, the mind–body relationship and a biopsychological ability to cope with stress. The multiple components of the pathogenesis and maintenance of the condition necessitate a multi-modal treatment approach. Individually tailored treatment is an important consideration, with the increasing recognition that different fibromyalgia subgroups exist with different clinical characteristics. Consequently, although an evidence-based approach to fibromyalgia management is always desirable, the approach of physicians is inevitably empirical, and must have the aim of creating a strong alliance with the patient and formulating shared, realistic treatment goals.

Fibromyalgia is a fairly common syndrome in the general population, reaching a prevalence of 2–3% worldwide.

The complex polysymptomatology of fibromyalgia comprises not only chronic widespread pain, fatigue and sleep alterations but also autonomic disturbances, cognitive dysfunction, hypersensitivity to external stimuli, somatic symptoms and psychiatric disorders.

Owing to the subjectivity of the symptoms and the lack of biomarkers, diagnosis is exquisitely clinical, and diagnostic criteria are constantly evolving; early diagnosis and prevention are still elusive goals.

Fibromyalgia severity and progression or improvement can be evaluated by means of a plethora of composite tests.

Fibromyalgia pathogenesis is not fully understood; hypotheses state that genetic predisposition, stressful life events, peripheral (inflammatory) and central (cognitive–emotional) mechanisms interplay to create pain dysperception owing to neuromorphological modifications (‘nociplastic pain’).

Treatment should be multimodal and built on four pillars (patient education; fitness; pharmacotherapy; and psychotherapy); the approach should be individualized, symptom-based and stepwise, establishing shared goals with the patient.

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Queiroz, L. P. Worldwide epidemiology of fibromyalgia. Curr. Pain. Headache Rep. 17 , 356 (2013).

PubMed   Google Scholar  

Jones, G. T. et al. The prevalence of fibromyalgia in the general population: a comparison of the American College of Rheumatology 1990, 2010, and modified 2010 classification criteria. Arthritis Rheumatol. 67 , 568–575 (2015).

Perrot, S. Fibromyalgia: a misconnection in a multiconnected world? Eur. J. Pain. 23 , 866–873 (2019).

Macfarlane, G. J. et al. EULAR revised recommendations for the management of fibromyalgia. Ann. Rheum. Dis. 76 , 318–328 (2017).

CAS   PubMed   Google Scholar  

Branco, J. C. et al. Prevalence of fibromyalgia: a survey in five European countries. Semin. Arthritis Rheum. 39 , 448–453 (2009).

Chaaya, M. et al. High burden of rheumatic diseases in Lebanon: a COPCORD study. Int. J. Rheum. Dis. 15 , 136–143 (2011).

Nakamura, I. et al. An epidemiologic internet survey of fibromyalgia and chronic pain in Japan. Arthritis Care Res. 66 , 1093–1101 (2014).

Google Scholar  

Turhanoglu, A. D. et al. The epidemiological aspects of fibromyalgia syndrome in adults living in Turkey: a population based study. J. Musculoskelet. Pain 16 , 141–147 (2008).

Guermazi, M. et al. [Fibromyalgia prevalence in Tunisia]. Tunis. Med. 86 , 806–811 (2008).

Rodrigues Senna, E. et al. Prevalence of rheumatic diseases in Brazil: a study using the COPCORD approach. J. Rheumatol. 31 , 594–597 (2004).

White, K. P., Speechley, M., Harth, M. & Ostbye, T. The London fibromyalgia epidemiology study: the prevalence of fibromyalgia syndrome in London, Ontario. J. Rheumatol. 26 , 1570–1576 (1999).

Vincent, A. et al. Prevalence of fibromyalgia: a population-based study in Olmsted County, Minnesota, utilizing the Rochester epidemiology project. Arthritis Care Res. 65 , 786–792 (2013).

Scudds, R. A., Li, E. K. M. & Scudds, R. J. The prevalence of fibromyalgia syndrome in Chinese people in Hong Kong. J. Musculoskelet. Pain 14 , 3–11 (2006).

Ablin, J. N. et al. Prevalence of fibromyalgia in the Israeli population: a population-based study to estimate the prevalence of fibromyalgia in the Israeli population using the London Fibromyalgia Epidemiology Study Screening Questionnaire (LFESSQ). Clin Exp Rheumatol 30 , 39–43 (2012).

Prescott, E. et al. Fibromyalgia in the adult danish population. I. A prevalence study. Scand. J. Rheumatol. 22 , 233–237 (1993).

Salaffi, F. et al. Prevalence of musculoskeletal conditions in an Italian population sample: Results of a regional community-based study. I. The MAPPING study. Clin. Exp. Rheumatol. 23 , 819–828 (2005).

Spaeth, M. Epidemiology, costs, and the economic burden of fibromyalgia. Arthritis Res. Ther. 11 , 2–3 (2009).

Häuser, W., Sarzi-Puttini, P. & Fitzcharles, M. A. Fibromyalgia syndrome: under-, over- and misdiagnosis. Clin. Exp. Rheumatol. 37 , 90–97 (2019).

Lachaine, J., Beauchemin, C. & Landry, P.-A. Clinical and economic characteristics of patients with fibromyalgia syndrome. Clin. J. Pain 26 , 284–290 (2010).

Berger, A., Dukes, E., Martin, S., Edelsberg, J. & Oster, G. Characteristics and healthcare costs of patients with fibromyalgia syndrome. Int. J. Clin. Pract. 61 , 1498–1508 (2007).

CAS   PubMed   PubMed Central   Google Scholar  

Knight, T. et al. Health-resource use and costs associated with fibromyalgia in France, Germany, and the United States. Clinicoecon. Outcomes Res. 5 , 171–180 (2013).

PubMed   PubMed Central   Google Scholar  

Lacasse, A., Bourgault, P. & Choinière, M. Fibromyalgia-related costs and loss of productivity: a substantial societal burden. BMC Musculoskelet. Disord. 17 , 168 (2016).

Guymer, E. K., Littlejohn, G. O., Brand, C. K. & Kwiatek, R. A. Fibromyalgia onset has a high impact on work ability in Australians. Intern. Med. J. 46 , 1069–1074 (2016).

Gracely, R. H., Grant, M. A. & Giesecke, T. Evoked pain measures in fibromyalgia. Best Pract. Res. Clin. Rheumatol. 17 , 593–609 (2003).

Koroschetz, J. et al. Fibromyalgia and neuropathic pain — differences and similarities. A comparison of 3057 patients with diabetic painful neuropathy and fibromyalgia. BMC Neurol. 11 , 55 (2011).

Rehm, S. E. et al. A cross-sectional survey of 3035 patients with fibromyalgia: subgroups of patients with typical comorbidities and sensory symptom profiles. Rheumatology 49 , 1146–1152 (2010).

Rossi, A. et al. Fibromyalgia and nutrition: what news? Clin. Exp. Rheumatol. 33 , S117–S125 (2015).

Bossema, E. R., Van Middendorp, H., Jacobs, J. W. G., Bijlsma, J. W. J. & Geenen, R. Influence of weather on daily symptoms of pain and fatigue in female patients with fibromyalgia: a multilevel regression analysis. Arthritis Care Res. 65 , 1019–1025 (2013).

Staud, R., Robinson, M. E., Weyl, E. E. & Price, D. D. Pain variability in fibromyalgia is related to activity and rest: role of peripheral tissue impulse input. J. Pain 11 , 1376–1383 (2010).

Casale, R. et al. Fibromyalgia and the concept of resilience. Clin. Exp. Rheumatol. 37 , 105–113 (2019).

Sandıkçı, S. C. & Özbalkan, Z. Fatigue in rheumatic diseases. Eur. J. Rheumatol. 2 , 109–113 (2015).

Kleinman, L. et al. Assessment of sleep in patients with fibromyalgia: qualitative development of the fibromyalgia sleep diary. Health Qual. Life Outcomes 12 , 111 (2014).

Bennett, R. M., Jones, J., Turk, D. C., Russell, I. J. & Matallana, L. An internet survey of 2,596 people with fibromyalgia. BMC Musculoskelet. Disord. 8 , 27 (2007).

Glass, J. M. Review of cognitive dysfunction in fibromyalgia: a convergence on working memory and attentional control impairments. Rheum. Dis. Clin. North Am. 35 , 299–311 (2009).

Walitt, B. et al. The longitudinal outcome of fibromyalgia: a study of 1555 patients. J. Rheumatol. 38 , 2238–2246 (2011).

Ifergane, G., Buskila, D., Simiseshvely, N., Zeev, K. & Cohen, H. Prevalence of fibromyalgia syndrome in migraine patients. Cephalalgia 26 , 451–456 (2006).

Mathieu, N. [Somatic comorbidities in irritable bowel syndrome: fibromyalgia, chronic fatigue syndrome, and interstitial cystitis]. Gastroenterol. Clin. Biol. 33 , S17–S25 (2009).

Nickel, J. C. et al. Interstitial cystitis/painful bladder syndrome and associated medical conditions with an emphasis on irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome. J. Urol. 184 , 1358–1363 (2010).

Kalichman, L. Association between fibromyalgia and sexual dysfunction in women. Clin. Rheumatol. 28 , 365–369 (2009).

Arnold, L. M. et al. AAPT diagnostic criteria for fibromyalgia. J. Pain 20 , 611–628 (2018).

Solano, C. et al. Autonomic dysfunction in fibromyalgia assessed by the composite autonomic symptoms scale (COMPASS). J. Clin. Rheumatol. 15 , 172–176 (2009).

Vincent, A. et al. A report of the autonomic symptom profile in patients with fibromyalgia. J. Clin. Rheumatol. 20 , 106–108 (2014).

Wolfe, F. et al. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 33 , 160–172 (1990).

Yunus, M. B. & Aldag, J. C. Restless legs syndrome and leg cramps in fibromyalgia syndrome: a controlled study. BMJ 312 , 1339 (1996).

Viola-Saltzman, M., Watson, N. F., Bogart, A., Goldberg, J. & Buchwald, D. High prevalence of restless legs syndrome among patients with fibromyalgia: a controlled cross-sectional study. J. Clin. Sleep Med. 6 , 423–427 (2010).

Stehlik, R., Arvidsson, L. & Ulfberg, J. Restless legs syndrome is common among female patients with fibromyalgia. Eur. Neurol. 61 , 107–111 (2009).

Jones, K. D., Horak, F. B., Winters-Stone, K., Irvine, J. M. & Bennett, R. M. Fibromyalgia is associated with impaired balance and falls. J. Clin. Rheumatol. 15 , 16–21 (2009).

Galvez-Sánchez, C. M., Duschek, S. & Del Paso, G. A. R. Psychological impact of fibromyalgia: current perspectives. Psychol. Res. Behav. Manag. 12 , 117–127 (2019).

González, E., Elorza, J. & Failde, I. Fibromyalgia and psychiatric comorbidity: their effect on the quality of life patients. Actas Esp. Psiquiatr. 38 , 295–300 (2010).

Kessler, R. C. et al. The epidemiology of major depressive disorder: results from the National Comorbidity Survey Replication (NCS-R). JAMA 289 , 3095–3105 (2003).

Dreyer, L., Kendall, S., Danneskiold-Samsøe, B., Bartels, E. M. & Bliddal, H. Mortality in a cohort of Danish patients with fibromyalgia: Increased frequency of suicide. Arthritis Rheum. 62 , 3101–3108 (2010).

Gill, H. et al. The prevalence of suicidal behaviour in fibromyalgia patients. Prog. Neuropsychopharmacol. Biol. Psychiatry https://doi.org/10.1016/j.pnpbp.2020.110078 (2020).

Article   PubMed   Google Scholar  

Bennett, R. M. Fibrositis: misnomer for a common rheumatic disorder. West. J. Med. 134 , 405–413 (1981).

Wolfe, F. et al. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR preliminary diagnostic criteria for fibromyalgia. J. Rheumatol. 38 , 1113–1122 (2011).

Wolfe, F. et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. 62 , 600–610 (2010).

Wolfe, F. et al. 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Semin. Arthritis Rheum. 46 , 319–329 (2016).

Atzeni, F. et al. One year in review 2019: fibromyalgia. Clin. Exp. Rheumatol. 37 , S3–S10 (2019).

Perrot, S., Bouhassira, D. & Fermanian, J. Development and validation of the fibromyalgia rapid screening tool (FiRST). Pain 150 , 250–256 (2010).

Baron, R. et al. Improving the primary care physicians’ decision making for fibromyalgia in clinical practice: development and validation of the fibromyalgia detection (FibroDetect®) screening tool. Health Qual. Life Outcomes 12 , 128 (2014).

Salaffi, F. et al. Development and validation of the SImple FIbromyalgia Screening questionnaire for improving the recognition of fibromyalgia in daily practice. Clin. Exp. Rheumatol. 38 , 9–16 (2019).

Yunus, M. B. Central sensitivity syndromes: a new paradigm and group nosology for fibromyalgia and overlapping conditions, and the related issue of disease versus illness. Semin. Arthritis Rheum. 37 , 339–352 (2008).

Wolfe, F. Fibromyalgianess. Arthritis Care Res. 61 , 715–716 (2009).

Salaffi, F., Di Carlo, M., Arcà, S. & Galeazzi, M. Categorisation of disease severity states in fibromyalgia: a first step to support decision-making in health care policy. Clin. Exp. Rheumatol. 36 , 1074–1081 (2018).

Davis, F. et al. Characterizing classes of fibromyalgia within the continuum of central sensitization syndrome. J. Pain Res. 11 , 2551–2560 (2018).

Ballantyne, J. C. & Sullivan, M. D. Intensity of chronic pain — the wrong metric? N. Engl. J. Med. 373 , 2098–2099 (2015).

Salaffi, F., Sarzi-Puttini, P., Ciapetti, A. & Atzeni, F. Clinimetric evaluations of patients with chronic widespread pain. Best Pract. Res. Clin. Rheumatol. 25 , 249–270 (2011).

Burckhardt, C. S., Clark, S. R. & Bennett, R. M. The fibromyalgia impact questionnaire: development and validation. J. Rheumatol. 18 , 728–733 (1991).

Bennett, R. M. et al. The Revised Fibromyalgia Impact Questionnaire (FIQR): validation and psychometric properties. Arthritis Res. Ther. 11 , R120 (2009).

Salaffi, F. et al. Psychometric characteristics of the Italian version of the revised Fibromyalgia Impact Questionnaire using classical test theory and Rasch analysis. Clin. Exp. Rheumatol. 31 , S41–S49 (2013).

Salaffi, F. et al. Development and validation of the self-administered Fibromyalgia Assessment Status: a disease-specific composite measure for evaluating treatment effect. Arthritis Res. Ther. 11 , R125 (2009).

Iannuccelli, C. et al. Psychometric properties of the Fibromyalgia Assessment Status (FAS) index: a national web-based study of fibromyalgia. Clin. Exp. Rheumatol. 29 , S49–S54 (2011).

Häuser, W. et al. Validation of the fibromyalgia survey questionnaire within a cross-sectional survey. PLoS ONE 7 , e37504 (2012).

Häuser, W., Brähler, E., Wolfe, F. & Henningsen, P. Patient Health Questionnaire 15 as a generic measure of severity in fibromyalgia syndrome: surveys with patients of three different settings. J. Psychosom. Res. 76 , 307–311 (2014).

Kosek, E. et al. Do we need a third mechanistic descriptor for chronic pain states? Pain 157 , 1382–1386 (2016).

Yunus, M. B. Central sensitivity syndromes: a unified concept for fibromyalgia and other similar maladies. J. Indian Rheumatol. Assoc. 8 , 27–33 (2000).

Borchers, A. T. & Gershwin, M. E. Fibromyalgia: a critical and comprehensive review. Clin. Rev. Allergy Immunol. 49 , 100–151 (2015).

Ceko, M., Bushnell, M. C. & Gracely, R. H. Neurobiology underlying fibromyalgia symptoms. Pain Res. Treat. https://doi.org/10.1155/2012/585419 (2012).

Desmeules, J. A. et al. Neurophysiologic evidence for a central sensitization in patients with fibromyalgia. Arthritis Rheum. 48 , 1420–1429 (2003).

Sörensen, J., Graven-Nielsen, T., Henriksson, K. G., Bengtsson, M. & Arendt-Nielsen, L. Hyperexcitability in fibromyalgia. J. Rheumatol. 25 , 152–155 (1998).

Staud, R., Vierck, C. J., Cannon, R. L., Mauderli, A. P. & Price, D. D. Abnormal sensitization and temporal summation of second pain (wind-up) in patients with fibromyalgia syndrome. Pain 91 , 165–175 (2001).

McDermid, A. J., Rollman, G. B. & McCain, G. A. Generalized hypervigilance in fibromyalgia: evidence of perceptual amplification. Pain 66 , 133–144 (1996).

Geisser, M. E. et al. A psychophysical study of auditory and pressure sensitivity in patients with fibromyalgia and healthy controls. J. Pain 9 , 417–422 (2008).

Martenson, M. E. et al. A possible neural mechanism for photosensitivity in chronic pain. Pain 157 , 868–878 (2016).

Harris, R. E. & Clauw, D. J. How do we know that the pain in fibromyalgia is “Real”? Curr. Pain Headache Rep. 10 , 403–407 (2006).

Gracely, R. H., Petzke, F., Wolf, J. M. & Clauw, D. J. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 46 , 1333–1343 (2002).

Cook, D. B. et al. Functional imaging of pain in patients with primary fibromyalgia. J. Rheumatol. 31 , 364–378 (2004).

Burgmer, M. et al. Altered brain activity during pain processing in fibromyalgia. Neuroimage 44 , 502–508 (2009).

Jensen, K. B. et al. Evidence of dysfunctional pain inhibition in fibromyalgia reflected in rACC during provoked pain. Pain 144 , 95–100 (2009).

Dehghan, M. et al. Coordinate-based (ALE) meta-analysis of brain activation in patients with fibromyalgia. Hum. Brain Mapp. 37 , 1749–1758 (2016).

Napadow, V. et al. Intrinsic brain connectivity in fibromyalgia is associated with chronic pain intensity. Arthritis Rheum. 62 , 2545–2555 (2010).

Pujol, J. et al. Mapping brain response to pain in fibromyalgia patients using temporal analysis of fMRI. PLoS ONE 4 , e5224 (2009).

Jensen, K. B. et al. Patients with fibromyalgia display less functional connectivity in the brain’s pain inhibitory network. Mol. Pain 8 , 32 (2012).

Julien, N., Goffaux, P., Arsenault, P. & Marchand, S. Widespread pain in fibromyalgia is related to a deficit of endogenous pain inhibition. Pain 114 , 295–302 (2005).

Vierck, C. J. et al. The effect of maximal exercise on temporal summation of second pain (windup) in patients with fibromyalgia syndrome. J. Pain 2 , 334–344 (2001).

Normand, E. et al. Pain inhibition is deficient in chronic widespread pain but normal in major depressive disorder. J. Clin. Psychiatry 72 , 219–224 (2011).

Lutz, J. et al. White and gray matter abnormalities in the brain of patients with fibromyalgia: a diffusion-tensor and volumetric imaging study. Arthritis Rheum. 58 , 3960–3969 (2008).

Russell, I. J. et al. Elevated cerebrospinal fluid levels of substance P in patients with the fibromyalgia syndrome. Arthritis Rheum. 37 , 1593–1601 (1994).

Harris, R. E. et al. Decreased central mu-opioid receptor availability in fibromyalgia. J. Neurosci. 27 , 10000–10006 (2007).

Baraniuk, J. N., Whalen, G., Cunningham, J. & Clauw, D. J. Cerebrospinal fluid levels of opioid peptides in fibromyalgia and chronic low back pain. BMC Musculoskelet. Disord. 5 , 48 (2004).

Russell, I. J., Vaeroy, H., Javors, M. & Nyberg, F. Cerebrospinal fluid biogenic amine metabolites in fibromyalgia/fibrositis syndrome and rheumatoid arthritis. Arthritis Rheum. 35 , 550–556 (1992).

Yunus, M. B., Dailey, J. W., Aldag, J. C., Masi, A. T. & Jobe, P. C. Plasma tryptophan and other amino acids in primary fibromyalgia: a controlled study. J. Rheumatol. 19 , 90–94 (1992).

Wood, P. B. et al. Fibromyalgia patients show an abnormal dopamine response to pain. Eur. J. Neurosci. 25 , 3576–3582 (2007).

Wood, P. B. et al. Reduced presynaptic dopamine activity in fibromyalgia syndrome demonstrated with positron emission tomography: a pilot study. J. Pain 8 , 51–58 (2007).

Harris, R. E. Elevated excitatory neurotransmitter levels in the fibromyalgia brain. Arthritis Res. Ther. 12 , 141 (2010).

Foerster, B. R. et al. Reduced insular γ-aminobutyric acid in fibromyalgia. Arthritis Rheum. 64 , 579–583 (2012).

Arnold, L. M. et al. Family study of fibromyalgia. Arthritis Rheum. 50 , 944–952 (2004).

Stormorken, H. & Brosstad, F. Fibromyalgia: family clustering and sensory urgency with early onset indicate genetic predisposition and thus a “true” disease. Scand. J. Rheumatol. 21 , 207 (1992).

Buskila, D., Neumann, L., Hazanov, I. & Carmi, R. Familial aggregation in the fibromyalgia syndrome. Semin. Arthritis Rheum. 26 , 605–611 (1996).

Ablin, J. N. & Buskila, D. Update on the genetics of the fibromyalgia syndrome. Best Pract. Res. Clin. Rheumatol. 29 , 20–28 (2015).

Smith, S. B. et al. Large candidate gene association study reveals genetic risk factors and therapeutic targets for fibromyalgia. Arthritis Rheum. 64 , 584–593 (2012).

Haliloglu, S., Carlioglu, A., Akdeniz, D., Karaaslan, Y. & Kosar, A. Fibromyalgia in patients with other rheumatic diseases: prevalence and relationship with disease activity. Rheumatol. Int. 34 , 1275–1280 (2014).

Fan, A. et al. Frequency of concomitant fibromyalgia in rheumatic diseases: monocentric study of 691 patients. Semin. Arthritis Rheum. 47 , 129–132 (2017).

Affaitati, G. et al. Effects of treatment of peripheral pain generators in fibromyalgia patients. Eur. J. Pain 15 , 61–69 (2011).

Doppler, K., Rittner, H. L., Deckart, M. & Sommer, C. Reduced dermal nerve fiber diameter in skin biopsies of patients with fibromyalgia. Pain 156 , 2319–2325 (2015).

Clauw, D. J. What is the meaning of “small fiber neuropathy” in fibromyalgia? Pain 156 , 2115–2116 (2015).

Ren, K. & Dubner, R. Interactions between the immune and nervous systems in pain. Nat. Med. 16 , 1267–1276 (2010).

Sarzi-Puttini, P. et al. Anti-polymer antibodies are correlated with pain and fatigue severity in patients with fibromyalgia syndrome. Autoimmunity 41 , 74–79 (2008).

Bazzichi, L. et al. Association between thyroid autoimmunity and fibromyalgic disease severity. Clin. Rheumatol. 26 , 2115–2120 (2007).

Cassisi, G., Sarzi-Puttini, P. & Cazzola, M. Chronic widespread pain and fibromyalgia: could there be some relationships with infections and vaccinations? Clin. Exp. Rheumatol. 29 , S118–S126 (2011).

Wormser, G. P. et al. Long-term assessment of fibromyalgia in patients with culture-confirmed Lyme disease. Arthritis Rheumatol. 67 , 837–839 (2015).

Häuser, W., Kosseva, M., Üceyler, N., Klose, P. & Sommer, C. Emotional, physical, and sexual abuse in fibromyalgia syndrome: a systematic review with meta-analysis. Arthritis Care Res. 63 , 808–820 (2011).

Häuser, W. et al. Self-reported childhood maltreatment, lifelong traumatic events and mental disorders in fibromyalgia syndrome: a comparison of US and German outpatients. Clin. Exp. Rheumatol. 33 , S86–S92 (2015).

Paras, M. L. et al. Sexual abuse and lifetime diagnosis of somatic disorders. JAMA 302 , 550 (2009).

Meeus, M. et al. Heart rate variability in patients with fibromyalgia and patients with chronic fatigue syndrome: a systematic review. Semin. Arthritis Rheum. 43 , 279–287 (2013).

Furlan, R. et al. Abnormalities of cardiovascular neural control and reduced orthostatic tolerance in patients with primary fibromyalgia. J. Rheumatol. 32 , 1787–1793 (2005).

Martínez-Martínez, L. A., Mora, T., Vargas, A., Fuentes-Iniestra, M. & Martínez-Lavín, M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J. Clin. Rheumatol. 20 , 146–150 (2014).

Martínez-Lavín, M. & Hermosillo, A. G. Autonomic nervous system dysfunction may explain the multisystem features of fibromyalgia. Semin. Arthritis Rheum. 29 , 197–199 (2000).

Carnevali, L., Koenig, J., Sgoifo, A. & Ottaviani, C. Autonomic and brain morphological predictors of stress resilience. Front. Neurosci. 12 , 228 (2018).

Rodriguez-Raecke, R., Niemeier, A., Ihle, K., Ruether, W. & May, A. Brain gray matter decrease in chronic pain is the consequence and not the cause of pain. J. Neurosci. 29 , 13746–13750 (2009).

Tan, A. C., Jaaniste, T. & Champion, D. Chronic widespread pain and fibromyalgia syndrome: life-course risk markers in young people. Pain Res. Manag. https://doi.org/10.1155/2019/6584753 (2019).

Article   PubMed   PubMed Central   Google Scholar  

Thompson, R. W., Arnkoff, D. B. & Glass, C. R. Conceptualizing mindfulness and acceptance as components of psychological resilience to trauma. Trauma Violence Abuse 12 , 220–235 (2011).

Bennett, J. M., Rohleder, N. & Sturmberg, J. P. Biopsychosocial approach to understanding resilience: Stress habituation and where to intervene. J. Eval. Clin. Pract. 24 , 1339–1346 (2018).

Hassett, A. L. & Finan, P. H. The role of resilience in the clinical management of chronic pain. Curr. Pain. Headache Rep. 20 , 39 (2016).

Engel, G. The need for a new medical model: a challenge for biomedicine. Science 196 , 129–136 (1977).

Gracely, R. H. et al. Pain catastrophizing and neural responses to pain among persons with fibromyalgia. Brain 127 , 835–843 (2004).

Ellingson, L. D., Stegner, A. J., Schwabacher, I. J., Lindheimer, J. B. & Cook, D. B. Catastrophizing interferes with cognitive modulation of pain in women with fibromyalgia. Pain Med. 19 , 2408–2422 (2018).

Geisser, M. E. et al. Perception of noxious and innocuous heat stimulation among healthy women and women with fibromyalgia: association with mood, somatic focus, and catastrophizing. Pain 102 , 243–250 (2003).

Lami, M. J., Martínez, M. P., Miró, E., Sánchez, A. I. & Guzmán, M. A. Catastrophizing, acceptance, and coping as mediators between pain and emotional distress and disability in fibromyalgia. J. Clin. Psychol. Med. Settings 25 , 80–92 (2018).

Broadbent, P., Liossi, C. & Schoth, D. E. Attentional bias to somatosensory stimuli in chronic pain patients: a systematic review and meta-analysis. Pain https://doi.org/10.1097/j.pain.0000000000002040 (2020).

Alciati, A. et al. Childhood adversities in patients with fibromyalgia: are they related to comorbid lifetime major depression? Clin. Exp. Rheumatol. 35 , 112–118 (2017).

Epstein, S. A. et al. Psychiatric disorders in patients with fibromyalgia. Psychosomatics 40 , 57–63 (1999).

Alciati, A., Sgiarovello, P., Atzeni, F. & Sarzi-Puttini, P. Psychiatric problems in fibromyalgia: clinical and neurobiological links between mood disorders and fibromyalgia. Reumatismo 64 , 268–274 (2012).

Sarzi-Puttini, P. et al. Dysfunctional syndromes and fibromyalgia: a 2012 critical digest. Clin. Exp. Rheumatol. 30 , 143–151 (2012).

Choy, E. H. S. The role of sleep in pain and fibromyalgia. Nat. Rev. Rheumatol. 11 , 513–520 (2015).

Rizzi, M. et al. Influence of autonomic nervous system dysfunction in the genesis of sleep disorders in fibromyalgia patients. Clin. Exp. Rheumatol. 35 , 74–80 (2017).

Lentz, M. J., Landis, C. A., Rothermel, J. & Shaver, J. L. Effects of selective slow wave sleep disruption on musculoskeletal pain and fatigue in middle aged women. J. Rheumatol. 26 , 1586–1592 (1999).

Smith, M. T., Edwards, R. R., McCann, U. D. & Haythornthwaite, J. A. The effects of sleep deprivation on pain inhibition and spontaneous pain in women. Sleep 30 , 494–505 (2007).

Moldofsky, H., Scarisbrick, P., England, R. & Smythe, H. Musculosketal symptoms and non-REM sleep disturbance in patients with “fibrositis syndrome” and healthy subjects. Psychosom. Med. 37 , 341–351 (1975).

Yalinay Dikmen, P., Yavuz, B. G. & Aydinlar, E. I. The relationships between migraine, depression, anxiety, stress, and sleep disturbances. Acta Neurol. Belg. 115 , 117–122 (2015).

Sivertsen, B., Harvey, A. G., Pallesen, S. & Hysing, M. Mental health problems in adolescents with delayed sleep phase: results from a large population-based study in Norway. J. Sleep. Res. 24 , 11–18 (2015).

Haase, L. et al. When the brain does not adequately feel the body: links between low resilience and interoception. Biol. Psychol. 113 , 37–45 (2016).

Giusti, E. M., Castelnuovo, G., & Molinari, E. Differences in multidisciplinary and interdisciplinary treatment programs for fibromyalgia: a mapping review. Pain Res. Manag. https://doi.org/10.1155/2017/7261468 (2017).

Gendelman, O. et al. Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care. Best Pract. Res. Clin. Rheumatol. 32 , 489–499 (2018).

García-Ríos, M. C. et al. Effectiveness of health education in patients with fibromyalgia: a systematic review. Eur. J. Phys. Rehabil. Med. 55 , 301–313 (2019).

Clauw, D. J. Fibromyalgia: a clinical review. JAMA 311 , 1547–1555 (2014).

Häuser, W. & Fitzcharles, M. A. Facts and myths pertaining to fibromyalgia. Dialogues Clin. Neurosci. 20 , 53–62 (2018).

Fitzcharles, M. A., Ste-Marie, P. A. & Pereira, J. X. Fibromyalgia: evolving concepts over the past 2 decades. Can. Med. Assoc. J. 185 , 645–651 (2013).

Pearson, J. et al. Fibromyalgia self-management: mapping the behaviour change techniques used in a practice-based programme. Musculoskelet. Care 18 , 372–382 (2020).

Schrepf, A. et al. Improvement in the spatial distribution of pain, somatic symptoms, and depression after a weight loss intervention. J. Pain 18 , 1542–1550 (2017).

Busch, A. J., Barber, K. A. R., Overend, T. J., Peloso, P. M. J. & Schachter, C. L. Exercise for treating fibromyalgia syndrome. Cochrane Database Syst. Rev. 17 , CD003786 (2007).

O’Dwyer, T., Maguire, S., Mockler, D., Durcan, L. & Wilson, F. Behaviour change interventions targeting physical activity in adults with fibromyalgia: a systematic review. Rheumatol. Int. 39 , 805–817 (2019).

Bjørklund, G., Dadar, M., Chirumbolo, S. & Aaseth, J. Fibromyalgia and nutrition: therapeutic possibilities? Biomed. Pharmacother. 103 , 531–538 (2018).

Pagliai, G., Giangrandi, I., Dinu, M., Sofi, F. & Colombini, B. Nutritional Interventions in the management of fibromyalgia syndrome. Nutrients 12 , 2525 (2020).

Clauw, D. J. Diagnosing and treating chronic musculoskeletal pain based on the underlying mechanism(s). Best Pract. Res. Clin. Rheumatol. 29 , 6–19 (2015).

Häuser, W., Petzke, F., Üçeyler, N. & Sommer, C. Comparative efficacy and acceptability of amitriptyline, duloxetine and milnacipran in fibromyalgia syndrome: a systematic review with meta-analysis. Rheumatology 50 , 532–543 (2011).

Häuser, W., Wolfe, F., Tölle, T., Uçeyler, N. & Sommer, C. The role of antidepressants in the management of fibromyalgia syndrome: a systematic review and meta-analysis. CNS Drugs 26 , 297–307 (2012).

Calandre, E. P., Rico-Villademoros, F. & Slim, M. An update on pharmacotherapy for the treatment of fibromyalgia. Expert. Opin. Pharmacother. 16 , 1347–1368 (2015).

Häuser, W., Urrútia, G., Tort, S., Üçeyler, N. & Walitt, B. Serotonin and noradrenaline reuptake inhibitors (SNRIs) for fibromyalgia syndrome. Cochrane Database Syst. Rev. 31 , CD010292 (2013).

Lunn, M. P., Hughes, R. A. & Wiffen, P. J. Duloxetine for treating painful neuropathy, chronic pain or fibromyalgia. Cochrane Database Syst. Rev. 3 , CD007115 (2014).

Pickering, G. et al. Milnacipran poorly modulates pain in patients suffering from fibromyalgia: a randomized double-blind controlled study. Drug Des. Devel. Ther. 12 , 2485–2496 (2018).

Üçeyler, N., Sommer, C., Walitt, B. & Häuser, W. Anticonvulsants for fibromyalgia. Cochrane Database Syst. Rev. 16 , CD010782 (2013).

Cooper, T. E., Derry, S., Wiffen, P. J. & Moore, R. A. Gabapentin for fibromyalgia pain in adults. Cochrane Database Syst. Rev. 1 , CD012188 (2017).

Straube, S., Derry, S., Moore, R. A. & McQuay, H. J. Pregabalin in fibromyalgia: meta-analysis of efficacy and safety from company clinical trial reports. Rheumatology 49 , 706–715 (2010).

Derry, S. et al. Pregabalin for pain in fibromyalgia in adults. Cochrane Database Syst. Rev. 9 , CD011790 (2016).

Alciati, A. et al. Controlled-release pregabalin in the treatment of fibromyalgia. Expert. Rev. Neurother. 18 , 617–623 (2018).

Tofferi, J. K., Jackson, J. L. & O’Malley, P. G. Treatment of fibromyalgia with cyclobenzaprine: a meta-analysis. Arthritis Rheum. 51 , 9–13 (2004).

Giovannitti, J. A., Thoms, S. M. & Crawford, J. J. Alpha-2 adrenergic receptor agonists: a review of current clinical applications. Anesth. Prog. 62 , 31–38 (2015).

Malanga, G. A., Gwyn, M. W., Smith, R. & Miller, D. Tizanidine is effective in the treatment of myofascial pain syndrome. Pain Physician 5 , 422–432 (2002).

See, S. & Ginzburg, R. Choosing a skeletal muscle relaxant. Am. Fam. Physician 78 , 365 (2008).

Littlejohn, G. O., Guymer, E. K. & Ngian, G.-S. Is there a role for opioids in the treatment of fibromyalgia? Pain Manag. 6 , 347–355 (2016).

Younger, J., Noor, N., McCue, R. & MacKey, S. Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels. Arthritis Rheum. 65 , 529–538 (2013).

Kim, P. S. & Fishman, M. A. Low-dose naltrexone for chronic pain: update and systemic review. Curr. Pain Headache Rep. 24 , 64 (2020).

Painter, J. T. & Crofford, L. J. Chronic opioid use in fibromyalgia syndrome: a clinical review. J. Clin. Rheumatol. 19 , 72–77 (2013).

Cazzola, M., Sarzi-Puttini, P., Buskila, D. & Atzeni, F. [Pharmacological treatment of fibromyalgia]. Reumatismo 59 , 280–291 (2007).

Clauw, D. J. & Hassett, A. L. The role of centralised pain in osteoarthritis. Clin. Exp. Rheumatol. 35 , S79–S84 (2017).

Moldofsky, H., Lue, F. A., Mously, C., Roth-Schechter, B. & Reynolds, W. J. The effect of zolpidem in patients with fibromyalgia: a dose ranging, double blind, placebo controlled, modified crossover study. J. Rheumatol. 23 , 529–533 (1996).

Walitt, B., Klose, P., Üçeyler, N., Phillips, T. & Häuser, W. Antipsychotics for fibromyalgia in adults. Cochrane Database Syst. Rev. 2016 , CD011804 (2016).

PubMed Central   Google Scholar  

Calandre, E. P. et al. Quetiapine extended-release (Seroquel-XR) versus amitriptyline monotherapy for treating patients with fibromyalgia: a 16-week, randomized, flexible-dose, open-label trial. Psychopharmacology 231 , 2525–2531 (2014).

Strouse, T. B. Cannabinoids in medical practice. Cannabis Cannabinoid Res. 1 , 38–43 (2016).

Walitt, B., Klose, P., Ma, F., Phillips, T. & Häuser, W. Cannabinoids for fibromyalgia (Review). Cochrane Database Syst. Rev. 7 , CD011694 (2016).

Farrell, M. et al. Cannabis and cannabinoids for the treatment of people with chronic noncancer pain conditions. Pain 159 , 1932–1954 (2018).

Aviram, J. & Samuelly-Leichtag, G. Efficacy of cannabis-based medicines for pain management: a systematic review and meta- analysis of randomized controlled trials. Pain Physician 20 , E755–E796 (2017).

Hill, K. P., Palastro, M. D., Johnson, B. & Ditre, J. W. Cannabis and pain: a clinical review. Cannabis Cannabinoid Res. 2 , 96–104 (2017).

Fiz, J., Duràn, M., Capellà, D., Carbonell, J. & Farré, M. Cannabis use in patients with fibromyalgia: effect on symptoms relief and health-related quality of life. PLoS ONE 6 , e18440 (2011).

Sarzi-Puttini, P. et al. Medical cannabis and cannabinoids in rheumatology: where are we now? Expert Rev. Clin. Immunol. 15 , 1019–1032 (2019).

Habib, G. & Artul, S. Medical cannabis for the treatment of fibromyalgia. J. Clin. Rheumatol. 24 , 255–258 (2018).

van de Donk, T. et al. An experimental randomized study on the analgesic effects of pharmaceutical-grade cannabis in chronic pain patients with fibromyalgia. Pain 160 , 860–869 (2019).

Yassin, M., Oron, A. & Robinson, D. Effect of adding medical cannabis to analgesic treatment in patients with low back pain related to fibromyalgia: an observational cross-over single centre study. Clin. Exp. Rheumatol. 37 , 13–20 (2019).

Giorgi, V. et al. Adding medical cannabis to standard analgesic treatment for fibromyalgia: a prospective observational study. Clin. Exp. Rheumatol. 38 , 53–59 (2020).

National Pain Report. Marijuana rated most effective for treating fibromyalgia, http://nationalpainreport.com/marijuana-rated-most-effective-for-treating-fibromyalgia-8823638.html (2014).

Rathore, F. A. & Afridi, A. Is combination pharmacotherapy effective for management of fibromyalgia in adults? — a Cochrane Review summary with commentary. J. Musculoskelet. Neuronal Interact. 20 , 297–300 (2020).

Boomershine, C. S. & Crofford, L. J. A symptom-based approach to pharmacologic management of fibromyalgia. Nat. Rev. Rheumatol. 5 , 191–199 (2009).

Thorpe, J., Shum, B., Ra, M., Pj, W. & Gilron, I. Combination pharmacotherapy for the treatment of fibromyalgia in adults (Review). Cochrane Database Syst. Rev. 2018 , CD010585 (2018).

Mease, P. J. et al. Milnacipran combined with pregabalin in fibromyalgia: a randomized, open-label study evaluating the safety and efficacy of adding milnacipran in patients with incomplete response to pregabalin. Ther. Adv. Musculoskelet. Dis. 5 , 113–126 (2013).

Gilron, I. et al. Combination of pregabalin with duloxetine for fibromyalgia. Pain 157 , 1532–1540 (2016).

Arnold, L. M. et al. Efficacy and safety of pregabalin in patients with fibromyalgia and comorbid depression taking concurrent antidepressant medication: a randomized, placebo-controlled study. J. Rheumatol. 42 , 1237–1244 (2015).

Bernardy, K., Klose, P., Welsch, P. & Häuser, W. Efficacy, acceptability and safety of cognitive behavioural therapies in fibromyalgia syndrome - A systematic review and meta-analysis of randomized controlled trials. Eur. J. Pain 22 , 242–260 (2018).

Jacobs, H. et al. The impact of a group-based multidisciplinary rehabilitation program on the quality of life in patients with fibromyalgia: results from the QUALIFIBRO Study. J. Clin. Rheumatol. https://doi.org/10.1097/RHU.0000000000001120 (2019).

Bernardy, K., Klose, P., Welsch, P. & Häuser, W. Efficacy, acceptability and safety of Internet-delivered psychological therapies for fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials. Eur. J. Pain 23 , 3–14 (2019).

Perrot, S. & Russell, I. J. More ubiquitous effects from non-pharmacologic than from pharmacologic treatments for fibromyalgia syndrome: a meta-analysis examining six core symptoms. Eur. J. Pain 18 , 1067–1080 (2014).

Gálvez, I., Torres-Piles, S. & Ortega-Rincón, E. Balneotherapy, immune system, and stress response: a hormetic strategy? Int. J. Mol. Sci. 19 , 1687 (2018).

Naumann, J. & Sadaghiani, C. Therapeutic benefit of balneotherapy and hydrotherapy in the management of fibromyalgia syndrome: a qualitative systematic review and meta-analysis of randomized controlled trials. Arthritis Res. Ther. 16 , R141 (2014).

Fioravanti, A. et al. Is balneotherapy effective for fibromyalgia? Results from a 6-month double-blind randomized clinical trial. Clin. Rheumatol. 37 , 2203–2212 (2018).

Honda Y. et al. Effects of physical-agent pain relief modalities for fibromyalgia patients: a systematic review and meta-analysis of randomized controlled trials. Pain Res. Manag. https://doi.org/10.1155/2018/2930632 (2018).

Kurt, E. E., Koçak, F. A., Erdem, H. R., Tuncay, F. & Kelez, F. Which non-pharmacological treatment is more effective on clinical parameters in patients with fibromyalgia: balneotherapy or aerobic exercise? Arch. Rheumatol. 31 , 162–169 (2016).

Guidelli, G. M., Tenti, S., de Nobili, E. & Fioravanti, A. Fibromyalgia syndrome and spa therapy: myth or reality? Clin. Med. Insights Arthritis Musculoskelet. Disord. 5 , 19–26 (2012).

Langhorst, J., Klose, P., Dobos, G. J., Bernardy, K. & Häuser, W. Efficacy and safety of meditative movement therapies in fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials. Rheumatol. Int. 33 , 193–207 (2013).

Mist, S. D., Firestone, K. A. & Jones, K. D. Complementary and alternative exercise for fibromyalgia: a meta-analysis. J. Pain Res. 6 , 247–260 (2013).

Cheng, C.-A. et al. Effectiveness of Tai Chi on fibromyalgia patients: a meta-analysis of randomized controlled trials. Complement. Ther. Med. 46 , 1–8 (2019).

Wang, C. et al. Effect of tai chi versus aerobic exercise for fibromyalgia: comparative effectiveness randomized controlled trial. BMJ 360 , k851 (2018).

Van Gordon, W., Shonin, E., Dunn, T. J., Garcia-Campayo, J. & Griffiths, M. D. Meditation awareness training for the treatment of fibromyalgia syndrome: a randomized controlled trial. Br. J. Health Psychol. 22 , 186–206 (2017).

Haugmark, T., Hagen, K. B., Smedslund, G. & Zangi, H. A. Mindfulness- and acceptance-based interventions for patients with fibromyalgia — a systematic review and meta-analyses. PLoS One 14 , e0221897 (2019).

Lauche, R., Cramer, H., Dobos, G., Langhorst, J. & Schmidt, S. A systematic review and meta-analysis of mindfulness-based stress reduction for the fibromyalgia syndrome. J. Psychosom. Res. 75 , 500–510 (2013).

Luciano, J. V. et al. Effectiveness of group acceptance and commitment therapy for fibromyalgia: A 6-month randomized controlled trial (EFFIGACT study). Pain 155 , 693–702 (2014).

Luciano, J. V. et al. Cost-utility of group acceptance and commitment therapy for fibromyalgia versus recommended Drugs: an economic analysis alongside a 6-month randomized controlled trial conducted in Spain (EFFIGACT Study). J. Pain 18 , 868–880 (2017).

Jensen, M. P. Hypnosis for chronic pain management: a new hope. Pain 146 , 235–237 (2009).

Zech, N., Hansen, E., Bernardy, K. & Häuser, W. Efficacy, acceptability and safety of guided imagery/hypnosis in fibromyalgia — a systematic review and meta-analysis of randomized controlled trials. Eur. J. Pain 21 , 217–227 (2017).

Deare, J. C. et al. Acupuncture for treating fibromyalgia. Cochrane Database Syst. Rev. 2013 , CD007070 (2013).

Yang, B. et al. Efficacy of acupuncture on fibromyalgia syndrome: a meta-analysis. J. Tradit. Chin. Med. 34 , 381–391 (2014).

Atzeni, F. et al. Hyperbaric oxygen treatment of fibromyalgia: a prospective observational clinical study. Clin. Exp. Rheumatol. 37 , 63–69 (2019).

Efrati, S. et al. Hyperbaric oxygen therapy can diminish fibromyalgia syndrome — prospective clinical trial. PLoS ONE 10 , e0127012 (2015).

Moisset, X., Lanteri-Minet, M. & Fontaine, D. Neurostimulation methods in the treatment of chronic pain. J. Neural Transm. 127 , 673–686 (2020).

Atzeni, F. et al. Hyperbaric oxygen therapy in fibromyalgia and the diseases involving the central nervous system. Clin. Exp. Rheumatol. 38 , S94–S98 (2020).

Brighina, F. et al. Brain modulation by electric currents in fibromyalgia: a structured review on non-invasive approach with transcranial electrical stimulation. Front. Hum. Neurosci. 11 , 13–40 (2019).

Mhalla, A. et al. Long-term maintenance of the analgesic effects of transcranial magnetic stimulation in fibromyalgia. Pain 152 , 1478–1485 (2011).

López-Solà, M. et al. Towards a neurophysiological signature for fibromyalgia. Pain 158 , 34–47 (2017).

Clauw, D. J., Essex, M. N., Pitman, V. & Jones, K. D. Reframing chronic pain as a disease, not a symptom: rationale and implications for pain management. Postgrad. Med. 131 , 185–198 (2019).

Bennett, R. Fibromyalgia: shining a light on fibromyalgia treatment. Nat. Rev. Rheumatol. 12 , 568–569 (2016).

Arnold, L. M. Duloxetine and other antidepressants in the treatment of patients with fibromyalgia. Pain Med. 8 , S63–S74 (2007).

Tzellos, T. G. et al. Gabapentin and pregabalin in the treatment of fibromyalgia: a systematic review and a meta-analysis. J. Clin. Pharm. Ther. 35 , 639–656 (2010).

Üçeyler, N., Sommer, C., Walitt, B. & Häuser, W. Anticonvulsants for fibromyalgia. Cochrane Database Syst. Rev. 2017 , 2–5 (2017).

Sarzi-Puttini, P. et al. Cannabinoids in the treatment of rheumatic diseases: pros and cons. Autoimmun. Rev. 18 , 102409 (2019).

Food and Drug Administration. Drug approval package: Cymbalta (duloxetine hydrochloride), 20, 30, and 60 mg capsules. FDA https://www.accessdata.fda.gov/drugsatfda_docs/nda/2010/022516_cymbalta_tocEDT.cfm (2010).

IBM Micromedex. Duloxetine (Oral Route). Mayo Foundation for Medical Education and Research (MFMER). https://www.mayoclinic.org/drugs-supplements/duloxetine-oral-route/side-effects/drg-20067247 (2020).

IBM Micromedex. Milnacipran (Oral Route). Mayo Foundation for Medical Education and Research (MFMER)2. https://www.mayoclinic.org/drugs-supplements/milnacipran-oral-route/side-effects/drg-20072479 (2020).

U.S. Food and Drug Administration. Drug approval package: Savella (Milnacipran HCI) Tablets. FDA https://www.accessdata.fda.gov/drugsatfda_docs/nda/2009/022256s000TOC.cfm (2009).

U.S. Food and Drug Administration. Drug approval package: Lyrica (pregabalin) Oral Solution 20 mg/ml. FDA https://www.accessdata.fda.gov/drugsatfda_docs/nda/2010/022488_lyrica_toc.cfm (2010).

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P.S.-P., V.G. and D.M. wrote the article. P.S.-P. and F.A. substantially contributed to discussion of content. P.S.-P., V.G., D.M. and F.A. researched data for the article and reviewed and edited the manuscript before submission.

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An interdisciplinary model commonly used in the field of chronic pain that incorporates the interactions among biological factors (such as physio-pathological factors), psychosocial factors (that is, emotional factors, such as distress or fear) and behavioural factors.

A qualitative alteration of the sensitivity of the skin (which can be an abnormal sensation of pricking, tingling and numbness).

A symptom of fibromyalgia involving an inability to think clearly or difficulties in concentrating.

A condition that causes decreased blood flow to the extremities (such as the fingers, toes, ears and nose) due to vasospasm; such spasms occur in response to cold, stress or emotional upset.

A clinical definition of pain arising from altered nociception, despite no evidence of tissue damage causing the activation of nociceptors or evidence of disease or lesions of the somatosensory system causing the pain.

A neurophysiological process of pain amplification in the central nervous system; this process occurs physiologically after injuries to elicit a protective behaviour and maximize the healing process.

A condition in which a painful stimulus is perceived as being even more painful.

A condition in which a normal stimulus is perceived as being painful.

The perception of repetitive noxious stimulation as being increasingly painful.

An unpleasant abnormal sensation (that can be spontaneous or evoked) that is usually associated with irritation or injury to a sensory nerve or nerve root.

Damage to small myelinated (type Aδ) nerve fibres or unmyelinated C peripheral nerve fibres; these small somatic fibres have sensory functions including thermal perception and nociception.

An umbrella term used to describe several different medical conditions that cause a malfunction of the autonomic nervous system.

An exaggerated amplification of emotional aspects that leads individuals to consider pain terrible and intolerable.

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Sarzi-Puttini, P., Giorgi, V., Marotto, D. et al. Fibromyalgia: an update on clinical characteristics, aetiopathogenesis and treatment. Nat Rev Rheumatol 16 , 645–660 (2020). https://doi.org/10.1038/s41584-020-00506-w

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Fibromyalgia: one year in review 2022

Affiliations.

• 1 Rheumatology Department, ASST Fatebenefratelli Luigi Sacco University Hospital, Milan, Italy. [email protected].
• 2 Rheumatology Department, ASST Fatebenefratelli Luigi Sacco University Hospital, Milan, and Department of Clinical Sciences and Community Health, Università degli Studi di Milano, Milan, Italy.
• 3 Rheumatology Department, ASST Fatebenefratelli Luigi Sacco University Hospital, Milan, Italy.
• 4 Rheumatology Unit, ATS Sardegna, P. Dettori Hospital, Tempio Pausania, Italy.
• 5 Department of Internal Medicine H, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.
• 6 Rheumatology Clinic, Ospedale Carlo Urbani, Università Politecnica delle Marche, Jesi, Ancona, Italy.
• PMID: 35748720
• DOI: 10.55563/clinexprheumatol/if9gk2

Fibromyalgia syndrome (FM) is a chronic widespread pain syndrome characterised by fatigue, sleep disturbances and many idiopathic pain symptoms. The aim of this review is to describe and summarise the most recent findings concerning the diagnosis, aetiopathogenesis and treatment of fibromyalgia syndrome published between January 2021 and January 2022 and appearing on PubMed database. In particular, last year's literature focused on the impact of COVID-19 pandemic on FM patients, on new aetiopathogenetic horizons and the last conclusions about pharmacological and non-pharmacological interventions.

Publication types

• Chronic Pain*
• Fatigue / complications
• Fibromyalgia* / diagnosis
• Fibromyalgia* / epidemiology
• Fibromyalgia* / etiology

01 July 2021

New study shows Fibromyalgia likely the result of autoimmune problems

The King's-led study, in collaboration with University of Liverpool and the Karolinska Institute, shows that many of the symptoms in fibromyalgia syndrome are caused by antibodies increasing the activity of pain-sensing nerves

New research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, in collaboration with the University of Liverpool and the Karolinska Institute, has shown that many of the symptoms in fibromyalgia syndrome (FMS) are caused by antibodies that increase the activity of pain-sensing nerves throughout the body.

The results show that fibromyalgia is a disease of the immune system, rather than the currently held view that it originates in the brain.

The study, published today in the Journal of Clinical Investigation, demonstrates that the increased pain sensitivity, muscle weakness, reduced movement, and reduced number of small nerve-fibres in the skin that are typical of FMS, are all a consequence of patient antibodies.

The implications of this study are profound. Establishing that fibromyalgia is an autoimmune disorder will transform how we view the condition and should pave the way for more effective treatments for the millions of people affected. Our work has uncovered a whole new area of therapeutic options and should give real hope to fibromyalgia patients. Previous exploration of therapies has been hampered by our limited understanding of the illness. This should now change. Treatment for FMS is focussed on gentle aerobic exercises, as well as drug and psychological therapies designed to manage pain, although these have proven ineffective in most patients and have left behind an enormous unmet clinical need Dr David Andersson, study primary investigator, King's College London

The researchers injected mice with antibodies from people living with FMS and observed that the mice rapidly developed an increased sensitivity to pressure and cold, as well as displaying reduced movement grip strength. In contrast, mice that were injected with antibodies from healthy people were unaffected, demonstrating that patient antibodies cause, or at least are a major contributor to the disease.

Furthermore, the mice injected with fibromyalgia antibodies recovered after a few weeks, when antibodies had been cleared from their system. This finding strongly suggests that therapies which reduce antibody levels in patients are likely to be effective treatments. Such therapies are already available and are used to treat other disorders that are caused by autoantibodies.

Current estimates suggest that at least 1 in 40 people are affected by FMS worldwide (80% of which are women) and is commonly characterised by widespread pain throughout the body, as well as fatigue (often referred to as ‘fibro fog’) and emotional distress. It most commonly develops between the ages of 25 and 55, although children can also get it.

Dr Andreas Goebel, the study’s principle clinical investigator from the University of Liverpool said, “When I initiated this study in the UK, I expected that some fibromyalgia cases may be autoimmune. But David’s team have discovered pain-causing antibodies in each recruited patient. The results offer amazing hope that the invisible, devastating symptoms of fibromyalgia will become treatable.”

Professor Camilla Svensson, the study’s primary investigator from Karolinska Institute said, “Antibodies from people with FMS living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings. The next step will be to identify what factors the symptom-inducing antibodies bind to. This will help us not only in terms of developing novel treatment strategies for FMS, but also of blood-based tests for diagnosis, which are missing today.

Fibromyalgia affects millions of people in the UK and can have a devastating impact on quality of life. It causes pain all over the body, fatigue, disturbed sleep and regular flare-ups where symptoms get even worse. Fibromyalgia is a particularly difficult condition to diagnose and manage because its causes are unknown. This research shows that antibodies found in human blood can cause fibromyalgia-like symptoms in mice, suggesting that these antibodies play a crucial role in the condition. Further research is needed but this offers hope to the millions of people with fibromyalgia that an effective treatment could be found in the relatively near future Dr Craig Bullock, Research Discovery and Innovations Lead at Versus Arthritis

This study was possible thanks to funding from the Medical Research Council (UK), Versus Arthritis, the Liverpool Pain Relief Foundation, the Swedish Research Council, the Knut and Alice Wallenberg Foundation, a donation from the Lundblad Family for clinical pain research at Karolinska Institute, and other agencies.

'Passive transfer of fibromyalgia symptoms from patients to mice’ Goebel et al https://doi.org/10.1172/JCI144201 is published in The Journal of Clinical Investigation

For more information, please contact the  Institute of Psychiatry, Psychology & Neuroscience .

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Study investigates how fibromyalgia changes the brain

by Ruhr-Universitaet-Bochum

One of the core symptoms experienced by patients with fibromyalgia is chronic pain. A team from the LWL Clinic for Psychosomatic Medicine and Psychotherapy at Ruhr University Bochum, Germany, has investigated the brain changes that are related to the disorder.

Using magnetic resonance data, the researchers proved that the areas of the brain involved in the processing and emotional evaluation of pain are altered in patients. This applies to the volume of both the gray matter, which mainly houses nerve cells , and the white matter , which mostly consists of fiber connections between the nerve cells. The researchers published their findings in the journal Arthritis Research and Therapy on May, 19 2023.

Changes in the pain network

The team surrounding Professor Martin Diers and Benjamin Mosch analyzed the magnetic resonance imaging data of 23 female patients with fibromyalgia and 21 healthy control subjects. They wanted to examine the volume of the gray matter, i.e., the nerve cells, in various pain-processing areas of the brain, and the so-called white matter, which mainly consists of the fiber connections between the nerve cells through which signals are transmitted.

"One of our goals was to find out whether the directionality of the diffusion of water molecules differs in certain areas of the brain, in other words: whether we can identify any regional differences in signal transmission," explains Benjamin Mosch.

The researchers found changes of the gray matter volume mainly in the pain network of the brain, i.e., in the regions responsible for processing and evaluating pain. "In certain regions responsible for the inhibition of pain, we found a decrease in gray matter in the patients compared to the healthy individuals," explains Benjamin Mosch. "In patients, the volume of these regions was significantly reduced."

Regarding the transmission of signals, changes were found in the thalamus. The thalamus is considered as an important node in neuronal pain processing. The deviations of the white matter in patients with fibromyalgia compared to healthy controls indicate an altered conduction of pain signals in patients with fibromyalgia.

Relationships between brain structure, perception and behavior

The team related the results of the structural brain changes to perceptional and behavioral characteristics of the study participants. The amount of decreased volume in a number of relevant brain regions is inversely related with the amount of perceived pain the patients report. The researchers made an interesting observation when analyzing the correlation between depressiveness or activity levels with the change in the volume of certain brain areas. The volume of the so-called putamen correlated negatively with the expression of depressive symptoms and positively with the activity level of the participants.

"This indicates that changes in the brain may not be permanent, but that they can be influenced; in other words they might be reversible, for example through an active everyday life," concludes Benjamin Mosch.

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Fibromyalgia: Pain out of control

Feeling like we have a degree of control makes us tolerate pain better. In the case of fibromyalgia, however, this simply doesn't work. A study provides clues as to why.

Fibromyalgia is a mysterious chronic pain disorder that is difficult to treat. Its causes are also still largely in the dark.

A study conducted by the team at the Clinic for Psychosomatic Medicine and Psychotherapy at Ruhr University Bochum, Germany, provides evidence that certain brain areas involved in processing pain don't function normally in fibromyalgia patients. In healthy people, they ensure that pain that we can control is easier to bear. The study found that these brain areas showed altered activity in patients with fibromyalgia. The research team headed by Professor Martin Diers published their findings in the journal NeuroImage: Clinical of 21 February 2023.

Controlling the off switch for heat pain

The degree to which we experience pain and the restriction caused by it depend largely on how we perceive it. If we have the feeling that we can control the pain and shut it down ourselves, for example, we will tolerate it better than if we feel at its mercy. "For people with chronic pain, the inability to control repeated attacks of pain is one of the most significant causes of impaired quality of life," explains Benjamin Mosch, lead author of the study. "And yet, the underlying neural mechanisms have so far mainly been studied in healthy controls."

In the current study, the team compared two female cohorts: 21 healthy participants and 23 fibromyalgia patients. Both groups were exposed to heat pain while their brain activities were monitored by functional magnetic resonance imaging. In one experimental run, the participants were able to stop the pain stimulus themselves. In another run, a computer controlled the start and end of the stimulus. "We kept the duration of the stimuli terminated by the computer the same on average as the stimuli terminated by the test subjects," says Martin Diers.

Cognitive resources are impaired

When women in the healthy control group were able to terminate the pain stimulus themselves, a number of mainly frontal brain areas were activated that seem to play an important role in modulating pain. This observation is consistent with previous studies involving healthy subjects. "Interestingly, however, we didn't detect any such activations in our patient group," points out Martin Diers. "This can serve as evidence for impaired pain processing among patients with fibromyalgia. It indicates that the cognitive resources for dealing with acute pain are impaired in these patients."

• Fibromyalgia

Fibromyalgia was added to the World Health Organisation's catalogue in 1994. An estimated two per cent of the German population is affected, 90 per cent of them are women. The disorder is characterised by recurring pain as well as various other symptoms, including sleep disturbances, depressive moods, chronic fatigue and digestive problems. On average, it takes 16 years before a diagnosis is made.

• Pain Control
• Brain-Computer Interfaces
• Brain Injury
• Gate control theory of pain
• Fatigue (physical)
• Collaboration
• Chronic pain

Story Source:

Materials provided by Ruhr-University Bochum . Original written by Meike Drießen. Note: Content may be edited for style and length.

Journal Reference :

• Benjamin Mosch, Verena Hagena, Stephan Herpertz, Michaela Ruttorf, Martin Diers. Neural correlates of control over pain in fibromyalgia patients . NeuroImage: Clinical , 2023; 37: 103355 DOI: 10.1016/j.nicl.2023.103355

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• Published: 03 August 2022

UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study)

• Nicky Wilson 1 ,
• Marcus J. Beasley 2 ,
• Catherine Pope 3 ,
• Debra Dulake 4 ,
• Laura J. Moir 2 ,
• Rosemary J. Hollick 2 &
• Gary J. Macfarlane 2  

BMC Health Services Research volume  22 , Article number:  989 ( 2022 ) Cite this article

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The UK’s “Getting It Right First Time” programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes.

To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia.

Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data.

Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: ‘a troublesome label’, ‘a heavy burden’ and ‘a low priority’. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK.

This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

Peer Review reports

Fibromyalgia is a complex multi-symptom long-term condition that significantly impacts healthcare systems around the world, including in the United Kingdom (UK) [ 1 , 2 , 3 , 4 ]. Management for people with fibromyalgia, in line with many other long-term conditions, ought to centre on primary care [ 5 , 6 , 7 ]. Yet, challenges diagnosing fibromyalgia, its heterogenous symptom profile and frequent coexistence with other diagnoses, and its historical link with rheumatology [ 8 , 9 , 10 , 11 ] mean that people with fibromyalgia commonly interact with healthcare professionals in a range of services and settings.

Treatment guidelines and care recommendations for people with fibromyalgia incorporate individually tailored pharmacological and non-pharmacological interventions to support self-management and address patient symptoms [ 5 , 12 , 13 ]. However, treatment patterns show inconsistent use of evidence-based interventions [ 14 , 15 , 16 , 17 , 18 ] and patients with fibromyalgia express low levels of satisfaction with the healthcare they receive [ 19 ]. In the UK, where 85% of healthcare is provided free at the point of delivery, people with fibromyalgia report difficulty accessing services, limited support from healthcare professionals to manage their condition and difficult patient-provider relations [ 20 , 21 , 22 ].

Integration between healthcare services is one way to improve patient satisfaction and increase access to care [ 23 ]. However, the way in which to organise health systems to deliver services that optimise outcomes in patients with fibromyalgia is unclear and has been highlighted as a knowledge gap in recent EULAR guidelines for the management of fibromyalgia [ 13 ]. A systematic review by Doebl et al. [ 19 ] failed to identify any evidence-based model of care for people with fibromyalgia that traversed the entire healthcare system.

In response to uncertainty about how best to organise health services for people with fibromyalgia, a large programme of research called PACFiND - PAtient-centred Care for Fibromyalgia: New pathway Design - has been launched. PACFiND is a suite of studies that aims to collect information from patients and healthcare professionals about UK healthcare services for people with fibromyalgia. The programme includes analysis of routinely collected data to enable mapping of patient healthcare journeys, the identification, through in-depth case studies across the UK, of better or best care (informed by evidence and the patient voice) and cost-benefit analyses of different models to guide development and co-design of new pathways of care for people with fibromyalgia. This manuscript is one component of PACFiND and seeks to profile healthcare for people with fibromyalgia in the UK: provision of NHS services and use of non-NHS services by people with fibromyalgia. The study objectives were to identify:

Which healthcare professionals diagnose fibromyalgia and the tools used to support diagnosis.

Which healthcare professionals treat and/or manage fibromyalgia and the treatments provided.

Non-NHS treatments and services people with fibromyalgia access to manage their condition.

Gaps in current healthcare services for people with fibromyalgia.

Possible case study sites for further research into service provision.

Two online open surveys (A and B) consisting of web-based questionnaires were conducted using Research Electronic Data Capture (REDCap) software ( https://redcap.abdn.ac.uk ). Both surveys were conducted prior to the start of the COVID-19 pandemic; survey A between 11th September 2019 and 5th January 2020, and survey B between 13th January and 3rd February 2020. The target population for survey A was NHS healthcare professionals consulting with people with fibromyalgia or with signs and symptoms suggestive of fibromyalgia, within the last 2 years. Survey A was designed to gather demographic data about respondents, information about diagnosing fibromyalgia, its treatment and management, and perceived gaps (if any) in the provision of services for people with fibromyalgia. Survey B was targeted at people aged 16 years or older living in the UK with a diagnosis of fibromyalgia and using non-NHS services to help them self-manage their condition. Survey B questions were grouped under three subheadings: demographic information; use of non-NHS services (including type of treatment/service, frequency, reasons for and experiences of access); and other comments. To help identify potential case study sites, participants were invited to enter the address / postcode of their NHS service or practice (survey A) and the non-NHS organisation or provider they accessed to help manage their condition (survey B).

The questionnaires were developed in close consultation with healthcare professionals, patient research partners and people with fibromyalgia, and included a mix of closed and open-ended questions. Survey A was registered in Scotland as a service evaluation; survey B was approved by the University of Aberdeen School of Medicine, Medical Sciences and Nutrition Ethics Review Board (CERB/2019/11/1805). Participants provided informed consent prior to accessing the surveys.

An invitation to participate in survey A, along with a link to the questionnaire, was distributed in primary care by contacting Clinical Commissioning Groups in England and the Scottish Primary Care Research Network in Scotland. Contacts were asked to include the information in newsletters and mailing lists. In Wales and Northern Ireland, email invitations with the survey link were sent directly to general practices. To distribute the survey in secondary care, NHS Trusts in England, Health Boards in Scotland, and Health & Social Care Trusts in Northern Ireland were contacted and asked to share an invitation to the survey. Additionally, the survey was circulated through professional networks and organisations. Survey B was advertised via the websites and social media channels of Versus Arthritis and Fibromyalgia Action UK and members of the PACFiND programme patient and public involvement group. Both surveys were publicised through the twitter feeds of the PACFiND project and its investigators, and on the University of Aberdeen-hosted PACFiND website.

Data analysis

Data were exported from REDCap to Microsoft Excel and Stata/SE15.1 for cleaning and analysis. Complete and incomplete questionnaires with an individual date and timestamp were included in the analysis provided i) informed consent to participate was recorded and ii) responses contributed data about the organisation, delivery and use of care for and by people with fibromyalgia. Quantitative data were analysed descriptively; summarised by the number of respondents answering a question in each category and expressed as a percentage of the total number of people answering that question. Qualitative data from responses to open ended questions were imported into NVivo 12 (QRS International), a computer software package, and coded to capture the essence of the text. Codes were organised and grouped into categories, and subthemes and themes were developed using the constant comparative method [ 24 , 25 ]. Analysis of the free text data was both inductive and deductive. Survey methods are reported according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) statement [ 26 ].

Survey A received 1701 responses, and survey B received 549 responses providing data about the organisation, delivery and use of UK healthcare services for, and by people with fibromyalgia. Of the 1701 records in survey A, 1122 (66.0%) respondents’ primary role was in England, 329 (19.3%) in Scotland, 190 (11.2%) in Wales, 53 (3.1%) in Northern Ireland, and for 7 (0.4%), no location was given. The healthcare setting for 701 (41.2%) respondents was general practice. Other healthcare settings were acute hospital (559, 32.9%), community hospital (264, 15.5%) and primary healthcare centres (137, 8.1%). Another setting or no setting was stated for 40 (2.4%) respondents. General practitioner was the main job for 642 (37.7%) respondents, while hospital doctors (194, 11.4%) included 111 rheumatologists, 53 physicians in pain medicine and 30 categorised as other, such as doctors working in emergency medicine and anaesthetics. Allied health professionals, nurses and mental health professionals (mental health practitioners, psychiatrists and psychologists) made up 26.1, 13.8 and 6.0% of the total records respectively. Other respondents ( n  = 84, 4.9%) included pharmacists, service managers, occupational health advisors and midwives. One respondent did not provide information about their primary role. Of the 549 records in Survey B, 335 (61.0%) participants lived in England, 98 (17.9%) in Scotland, 107 (19.5%) in Wales and nine (1.6%) in Northern Ireland.

Our findings (both quantitative and qualitative) are presented under the headings: ‘diagnosis’; ‘treatment and management of people with fibromyalgia’; and ‘gaps in healthcare services’. Quantitative data are shown in Tables  1 , 2 and 3 , while Table  4 contains examples of qualitative data underpinning key themes.

Of 1697 respondents who answered the question “Do you diagnose fibromyalgia?”, 717 (42.3%) reported they did (Table  1 ). Of those, the majority diagnose adults only (86.6%) or both adults and adolescents (12.7%). By speciality, the greatest proportion of professionals diagnosing fibromyalgia were rheumatologists (100.0%), followed by physicians in pain medicine (83.0%) and general practitioners (69.7%). Of the non-medical professionals, 20.1% of nurses, 13.5% of allied health professionals and 4.1% of mental health practitioners and psychologists stated they diagnose fibromyalgia. Tools to support fulfilment of fibromyalgia diagnostic criteria were used inconsistently by clinicians diagnosing fibromyalgia. Just over a quarter of NHS healthcare professionals (26.0%) stated they rely on clinical opinion alone when diagnosing fibromyalgia, 13.0% supplement clinical opinion with the Widespread Pain Index (WPI) and Symptom Severity (SS) Scale, while 54.0% report using the tender point examination.

Of the 980 respondents who indicated they do not diagnose fibromyalgia, 561 (57.2%) reported referring to other providers for diagnosis, most commonly a rheumatologist (73.6%), a general practitioner (43.0%) and a physician in pain medicine (22.8%). Analysis of free text data about diagnosis of fibromyalgia generated the theme ‘A troublesome label’.

Theme: A troublesome label

For many NHS professionals the process of diagnosing fibromyalgia focussed on recognising a custom symptom profile and excluding organic disease. Some clinicians reported using published diagnostic frameworks, such as the ACTTION-APS Pain Taxonomy (AAPT) and the 2010 / 2016 American College of Rheumatology criteria [ 27 , 28 , 29 ], while others drew on locally developed guidance and checklists produced by national charities. Notwithstanding this, several respondents considered contemporary diagnostic frameworks for fibromyalgia unsatisfactory, with one general practitioner highlighting the challenges associated with diagnosing fibromyalgia in practice.

As there is no objective confirmatory test for fibromyalgia, patients these days tend to self-diagnose and present with the typical history. The tender point examination is pretty unhelpful once a patient has self-diagnosed with fibromyalgia. (A-1148; General Practitioner (GP), Scotland) .

Sub-theme: diagnostic uncertainty and delay

Self-diagnosis, misdiagnosis and over-diagnosis, alongside perceptions of rising numbers of people with fibromyalgia concerned NHS healthcare professionals, although respondents’ understanding of the condition varied. Fibromyalgia’s fuzzy boundary led several healthcare professionals to query its distinctiveness in the presence of other syndromes and diagnoses, while others typified the condition as a mind-body illness, a psychological disorder, a modern day ‘inflammatory’ condition, synonymous with chronic pain, and, in the account below, reflective of individual character traits.

I dispute the actual diagnosis exists. I suspect they [people with fibromyalgia] have an undiagnosed mental illness or are just plain lazy and need to get a job and get on with life. (A-640; GP, South East England).

Low levels of skill and confidence to diagnose fibromyalgia among healthcare professionals, in particular general practitioners, was reported, along with missed opportunities to instigate early self-management because of delayed diagnosis. Some healthcare professionals highlighted a need for greater understanding about fibromyalgia to prevent patients from being referred around in circles. Several general practitioners expressed a lack of confidence to diagnose fibromyalgia, underpinned by fear of missing serious pathology or misattribution of a diagnosis with significant impact. Patients who self-diagnosed fibromyalgia seemed especially challenging to healthcare professionals. Comments from some NHS professionals hinted at associations between self-diagnosis and a propensity to ‘opt out’ of society and seek social benefits. For one hospital doctor the need for an easy and convenient test to differentiate between people with “real fibromyalgia and those who twist the system to diagnose themselves as fibromyalgia” was paramount (A-1462, Physician in pain medicine, West Midlands).

The power of diagnosis lies in its potential to explain things previously puzzling and delineate the path ahead [ 30 ]. While a few healthcare professionals reported making a ‘positive’ diagnosis in people with fibromyalgia - seeing it as an opportunity to pause, reset and pursue appropriate management strategies, others considered a fibromyalgia diagnosis of limited utility. Similar to findings from a study by Rasmussen [ 31 ], wherein general practitioners in Norway were reluctant to confer a diagnosis of fibromyalgia because of anticipated unhelpful consequences, a couple of the general practitioners in our study stated they avoided diagnosing fibromyalgia, based on perceptions about the label’s poor explanatory and prognostic value and its embodiment of long-term disability. One general practitioner commented that he hated making a diagnosis of fibromyalgia as it led to “a life of analgesia and general comorbidity” (A-1226, GP, Scotland), while in relation to care following diagnosis, an occupational therapist expressed apprehension about the label’s potential to negatively influence therapeutic opportunities.

[An] other concern is … [the] negative reaction [of staff] to the diagnosis and concern that [the] patient will not make any positive progress. (A-1238; Occupational Therapist, Scotland).

Sub-theme: the indelible nature of fibromyalgia

Perceptions about the indelibility of the fibromyalgia label additionally caused unease. Once given, a label of fibromyalgia was viewed by some healthcare professionals as hard to move past, leaving patients stuck in a cycle of unhelpful illness behaviours with limited opportunity for recovery. For a few respondents the continued preponderance of the fibromyalgia label risked diagnostic overshadowing, described by Iezzoni [ 32 ] as the ‘erroneous attribution of all new symptoms to an underlying health condition’ (p.2093). One person living with fibromyalgia commented that since being diagnosed with the illness, any issue they developed was “… almost always … blamed on my fibro” (B-246). The potential for diagnostic overshadowing becomes understandable in the light of a comment from one general practitioner diagnosing and treating patients with fibromyalgia, although it is unclear whether the ‘register’ mentioned in the account below is real or metaphorical:

[After diagnosis and treatment of patients with fibromyalgia] add to [the] register of patients to prevent prescribing and referral. (A-707, GP, South West England).

The diagnostic turbulence ([ 33 ], p2) evident in the accounts above, offers some insight into the number of healthcare professionals referring to other healthcare professionals to make or confirm a diagnosis of fibromyalgia, notably rheumatologists. In a few localities, rheumatology services diagnosed fibromyalgia routinely, in line with local pathways and or individual clinician referral behaviours: one general practitioner stated that fibromyalgia should only be diagnosed in secondary care as it could be “a devastating diagnosis of a severe chronic condition” (A-1351; GP Wales). While these arrangements were satisfactory for some, the disadvantages of these referral routes were highlighted by professionals and people with fibromyalgia, such as rising anxiety for patients during the often-long wait for a specialist appointment and a lack of a clear post-diagnosis management plan, influenced by a ‘diagnose and discharge model’ in outpatient secondary care services.

We can usually only offer a diagnostic opinion [for people with symptoms suggestive of fibromyalgia] (if possible, with management advice given at that appointment). (A-120; Rheumatologist, South West England).

My most recent patient diagnosed [with fibromyalgia] by the rheumatology department … was simply given the diagnosis and discharged with no follow up and no management plan. (A-1110; GP, Scotland).

Sub-theme: an empty diagnosis

The emptiness of the fibromyalgia diagnosis in the account above, at the heart of which is a failure to expand patient understanding about their illness experience and future management, has been recognised [ 34 , 35 ]. While most NHS healthcare professionals providing treatment and management to people with fibromyalgia stated they offer information and education (see Table  2 ), some respondents commented on a lack of a comprehensive resource available for those affected. One nurse suggested fibromyalgia specific education post diagnosis, similar to DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) for people with diabetes, while a general practitioner, themselves living with fibromyalgia, emphasised the vital link between patient education and effective self-management.

[There is a] lack of education provided to patients. I am so lucky that I have a reasonable understanding of my body [and] what I need to do to manage this [my fibromyalgia]. … many patients don’t [and] so are unmotivated to help themselves. This is essential in managing fibro[myalgia]. (A-617; GP, Greater London).

Treatment & management of people with fibromyalgia

Out of the 1690 NHS healthcare professionals who answered the question “Do you personally provide treatment or management for people with fibromyalgia?”, 1381 (81.7%) said they did (see Table 2 ). Of the 1619 who answered the question “Do you refer patients with fibromyalgia to other providers for treatment?” 1147 (70.8%) answered yes. Commonly, referrals were to physiotherapists (54.1%), physicians in pain medicine (42.9%) and rheumatologists (40.5%). Fewer referrals for treatment were made to a psychologist (28.5%), a mental health practitioner (26.2%), or an occupational therapist (25.5%).

After education and information, the treatment most frequently offered to people with fibromyalgia was a prescription medicine or a recommendation for an over-the-counter medicine (61.3% of respondents). The most common non-NHS treatments accessed by people with fibromyalgia were massage therapy (40.1%), mindfulness (38.8%) and support groups (38.1%), although many respondents reported using multiple interventions to manage their condition. Approximately one third of NHS healthcare professionals stated they provide non-pharmacological interventions such as structured exercise (34.6%), psychological therapies (33.7%), and multicomponent programmes (30.8%), with over half of the professionals delivering multicomponent programmes working in NHS pain services. Of those supplying information about their multicomponent programmes (369/425), 248 (67.2%) offered all three key interventions - education and advice, exercise and psychological therapies. The most popular delivery model for multicomponent programmes was one session weekly for 6 weeks.

Participant responses highlighted wide disparity in service provision. A few NHS professionals stated they offered or had access to specialist fibromyalgia services or fibromyalgia-specific programmes and education groups, mostly based in secondary care. Others reported no specialised or specific service provision for patients with fibromyalgia but made use of mainstream therapy services or pain management programmes. However, respondents’ views about the appropriateness and effectiveness of care delivered in these settings varied. Reports of services embedded in or linked to general practice to support people with fibromyalgia were few and far between, although one clinical pharmacist in South West England stated they offered a monthly fibromyalgia support group across their primary care network. Typically, participants across both surveys highlighted inadequate timely treatment and management opportunities for people with fibromyalgia leading to the theme ‘A heavy burden’.

Theme: A heavy burden

Pathways of care can promote equitable services for people with specific health conditions [ 36 ]. However, only a few healthcare professionals reported having a local pathway of care for patients with fibromyalgia. In one or two localities, care processes and interventions were organised and delivered solely in primary care, while in other areas, care provision spanned primary, secondary, and tertiary services. Inadequate care elements, limited communication between professional teams about the care of people with fibromyalgia, and a lack of co-ordinated care processes led to symptom-by-symptom management, an array of different referral routes (each with inbuilt delays), and “a postcode lottery for the quality of services available” (A-1483; Nurse in rheumatology, Yorkshire and the Humber). One rheumatologist explained the impact of this shortfall.

In common with many other locations, we have significant discontinuity in primary care and fragmentation of service provision which can result in confusion for the patient and unnecessary duplication of services. Patients frequently cycle through multiple services repeatedly and are at risk of medicalisation. (A-07; Rheumatologist, South East England).

Sub-theme: no route map

Along with the lack of local care pathways, many NHS professionals recounted experiences of substantial difficulties accessing recommended interventions for patients with fibromyalgia. Accounts from practitioners working in primary care highlighted the struggle to have referrals for people with fibromyalgia accepted by physical and mental health services, although some professionals working in secondary care also found access to ‘in house’ interventions problematic.

We have a large patient population within our practice with fibromyalgia and no secondary [care] based consultant will accept a referral and physio success is limited. Patients feel unsupported and left with no secondary care input. (A-176; Nurse in General Practice, Wales).

We have been refused access to the self-management programme run for FMS [Fibromyalgia Syndrome] patients by our Trust’s pain clinic… the service was overwhelmed. (A-1491; Rheumatologist, South West England).

One general practitioner summed up their experience of seeking care for patients with fibromyalgia – “‘not’ rheumatology, ‘not’ pain clinic, ‘not’ psychological therapies, ‘not’ physical therapies” (A-590; GP, North West England), while another described the frustration accompanying referral efforts.

Secondary care seems to fail to understand that 99% of fibromyalgia is managed in primary care. On the whole we [general practitioners] can manage it well and have a good level of understanding. It is no longer a ‘diagnosis of exclusion’ but something we actively engage with. On the rare occasions we feel out of our depth or have patients with complex symptoms that we struggle with, we need a service that will accept a referral, do a proper assessment, and provide a service to that patient. At present services simply pass the buck or …reject referrals. (A-1302; GP, Wales).

Sub-theme: an unwelcome condition

Underpinning difficulties accessing care were a range of influences: perceptions about the burden associated with caring for people with fibromyalgia were mentioned frequently in comments from healthcare professionals; provider experiences of outcomes, which one GP described as “rarely good” (A-716; GP, South West England); local and regional service policies; and the separation of mind from body that impacts responsibility for healthcare provision.

We [physiotherapy] do not accept referrals for fibromyalgia. We signpost to self-help management strategies in line with [local health board] policy (A-1424; Physiotherapist, Wales).

Psychology will not see patients with FM [fibromyalgia] without an additional mental health diagnosis (A-1141; GP, Scotland).

These, and other comments, give insight into the contested space occupied by people with fibromyalgia in the NHS. Some general practitioners and people with fibromyalgia viewed the rhythm and landscape of general practice as incompatible with caring for people with fibromyalgia, drawing attention to the challenges associated with managing fibromyalgia’s inherent complexity within traditional 10-minute general practice appointments.

General practice is not the ideal place for these patients to be managed. It results in their condition worsening, in addition to inappropriate polypharmacy. (A-1361; GP, Wales).

In contrast, other professionals, notably those working in hospital-based services (but also some from general practice), purported that care was best when positioned in less medical settings, albeit in the context of adequate available resource within general practice and the community.

This should be a diagnosis that can be made in the community and there should be better community-based support - physio, exercise classes, psychology input available to help GPs and their patients with fibromyalgia. (A-143; Rheumatologist, Scotland).

Sub-theme: unhelpful pharma and the cost of keeping going

Despite different views about where care for people with fibromyalgia should be located, professionals did agree on the problematic over and misuse of medicines for the treatment of fibromyalgia-related pain. The limited benefit, side effects and potential harms associated with a dominant pharmacological approach to managing pain were emphasised by respondents. Specialist pain and rheumatology services were singled out by professionals working in general practice for initiating and perpetuating inappropriate medicines prescribing, causing problems downstream in primary care. Similarly, general practitioners were charged with escalating patients through the analgesic ladder, which some in primary care suggested was due to a lack of accessible alternative treatment options.

One issue is if they [people with fibromyalgia] attend a pain clinic and get issued Morphine and Pregabalin, the implication is the GP will continue to prescribe. […] These drugs are linked with serious problems in the long term, and it is very difficult for the GP to say you should stop them […]. They [people with fibromyalgia] view you as unsympathetic. (A-615; GP, Greater London).

We often end up prescribing pain medication because we don’t have access to other treatments. Occasionally this helps but the pain medications are not without risk of dependence, sedation [and] polypharmacy. […] We have some in-house counselling, but this is a stretched underfunded service. (A-1148; GP, Scotland).

People with fibromyalgia reported frequent use of non-NHS interventions as an alternative or adjunct to medicines, with many describing benefits such as improved well-being and function, including work ability. However, the cost of such interventions was substantial, and for some this prohibited access to care.

I paid to use a private hydrotherapy pool, but my PIP (Personal Independence Payment) was cut, so I had to cancel all the extras I was paying for. (B-368, England).

Gaps in healthcare services

1601 NHS healthcare professionals answered the question “Are there gaps in your local healthcare service for people with fibromyalgia?”. Of these, only 182 (11.4%) said there were not any gaps and 274 (17.1%) said they did not know. The most frequently cited unmet need was a lack of available services. Over half of respondents (55.7%) stated this as an important unmet need, with 31.2% indicating that it was the most important unmet need.

Other needs frequently mentioned were lack of healthcare professionals’ knowledge or skills in assessment and treatment of fibromyalgia and long wait times to appointments. The most common reason for use of non-NHS services given by people with fibromyalgia was that services or treatments were not offered, or, if they were offered, provision was limited. Analysis of free text data relating to gaps in healthcare services led to generation of the theme ‘A low priority’.

Theme: A low priority

Fibromyalgia is a condition of sizable impact, yet respondents across both surveys emphasised a mismatch between the needs of people with fibromyalgia in the UK and NHS provision. One general practitioner reflected that fibromyalgia ranked lower in priority than a Dupuytren’s contracture, Footnote 1 while other respondents perceived a general lack of interest in the condition and those affected among healthcare professionals.

Sub-theme: A barren landscape

Some NHS healthcare professionals referred to an erosion of secondary care fibromyalgia services in their localities, leaving general practitioners and their patients with fibromyalgia in a barren landscape when the skills and resources of primary care are surpassed.

[My health board] has withdrawn their secondary care service for fibromyalgia. We have nowhere to refer these patients onto for specialist advice and support. (A-1327; GP, Wales).

In other areas where provision was present or appeared piecemeal, NHS healthcare professionals described oversubscribed services and long waiting times. Substantial gaps were reported in the availability of holistic programmes delivered by multidisciplinary teams, and psychological therapies. One general practitioner called for psychological therapists to be at the forefront of pain management approaches, while several allied health professionals believed enhancing their own psychology-based skills could go some way to bridging the shortfall in mental health support for people with fibromyalgia.

Sub-theme: nothing long-term

Also underpinning fibromyalgia’s low priority status were comments highlighting a lack of appropriate needs-based care provision for people with fibromyalgia throughout the life course. A lack of support outside of general practice post diagnosis for those learning to manage their fibromyalgia and during times of flare was highlighted, although one participant with fibromyalgia had worked with a general practice to address this situation.

I have …start[ed] a new patient support group. We have around 30 patient members. We have monthly meetings at [the] surgery [and] have a WhatsApp group and can meet locally for walks, coffee chat or crafts. (B-22, England).

Healthcare professionals described inadequate coverage and access to community-based opportunities such as low intensity exercise classes, wellbeing initiatives and NHS linked peer support groups. One participant living with fibromyalgia and a rheumatologist working in England outlined the impact of limited community support.

Self-management is fine in theory but really difficult to do well when in pain and exhausted. [You] need someone with expertise to coach, support and enable you to keep going. (B-270, England).

With current NHS service restrictions, once the diagnosis is made and initial treatment given, patients are discharged back to [the] GP, which should be fine but GP services [are] often really stretched and patients either don’t get the support they want or end up getting referred back to secondary care every few years to ‘query’ the diagnosis because the GP doesn’t know what to do. (A-36; Rheumatologist, South East England).

Sub-theme: [un]knowledgeable professionals

Professions are commonly distinguished from other occupational groups by specialist knowledge and skills [ 37 ]. Yet many participants referred to a general lack of understanding about fibromyalgia among healthcare professionals, both specialists and generalists, which was in turn perceived to link to delayed diagnosis, invalidation of people with fibromyalgia and, as in the account below, missed opportunities for interactions to support health and well-being.

I don’t find many people within the NHS… understand the condition. I feel they have opinions that are often wrong and… offensive. I go as little as possible to my doctors as they don’t understand it and therefore can’t help me. (B-274; Wales).

Stigma, commonly experienced by people with fibromyalgia, was evident in accounts from healthcare professionals, although the ‘often wrong and offensive’ opinions (outlined in the comment above) were typically attributed to other healthcare professionals rather than stated by those who participated in the survey. Occasionally, a healthcare professional did explicitly express a negative evaluation about people with fibromyalgia.

As an anaesthetist, my heart sinks when a preoperative patient announces …that they suffer with fibromyalgia, as they are often very ‘needy’ in the recovery area. Having observed and managed pain in post-operative patients for some 30 years, my impression is that the problems experienced by post-operative fibromyalgia patients are more ‘supratentorial’ in nature. (A-471; Hospital doctor, West Midlands).

Many respondents indicated a need for improved education of healthcare professionals about fibromyalgia. For example, orthoptists and midwives suggested they would benefit from increased training to support patients attending their services. However, even when professional expertise was available, it was not always used because of other service pressures.

For the last 16 years I have done a weekly fibromyalgia clinic seeing 5 new patients every week. Patients would come from across [the region]. […] However, because of a dearth of rheumatologists my fibro[myalgia] clinic has been shut on me and I now spend that clinic seeing ordinary patients who may or may not have inflammatory arthritis. Any old clinician could deal with these patients with a check list. … a lot of skill and experience is required to deal with patients with FMS [fibromyalgia syndrome] and I am one of the few rheumatologists with expertise in this field. This is an example of the NHS disrespecting people unfortunate enough to [have] FMS [fibromyalgia syndrome]. (A-1437; Rheumatologist, Wales).

This study offers a view of UK national health services for people with fibromyalgia from the perspective of NHS healthcare professionals. It also provides insight into the use of non-NHS services by people with fibromyalgia living in the UK. Other studies within the PACFiND research programme have investigated and reported experiences of people with fibromyalgia in relation to NHS services, in primary care specifically [ 35 ] and, more broadly, on the Healthtalk website ( https://healthtalk.org/Fibromyalgia ). Taken as a whole, the results of this study represent a journey across UK health services travelled by people with fibromyalgia. NHS healthcare professionals, in keeping with clinicians in other countries, report substantial variability diagnosing fibromyalgia. Of the general practitioners who responded to our survey, three out of ten reported not diagnosing fibromyalgia, influenced by low levels of diagnostic confidence and perceptions about the nature and utility of the fibromyalgia label. Rheumatologists are a key point of referral for a diagnosis of fibromyalgia, but this can delay initiation of treatment and management. Education and pharmacotherapy are the mainstay of treatment provided to people with fibromyalgia by NHS healthcare professionals, however, both patients and professionals recognise room for improvement in these approaches. Although the effectiveness of pharmacological and non-pharmacological treatments are rated similarly by people with fibromyalgia in the UK, non-pharmacological treatments have higher acceptability to those affected [ 38 ].

Referrals between NHS professionals to support people with fibromyalgia with their recovery are common, yet few professionals reported a local coordinated care path along which to direct people. Similar to health professionals’ experiences in other publicly funded health services, provision of non-pharmacological interventions for people with fibromyalgia, such as psychological therapies, is low. A lack of available NHS services, in particular multidisciplinary clinics providing holistic care and community-based opportunities linked to general practice to support self-management, was reported frequently and the primary reason people with fibromyalgia accessed non-NHS care.

While some of our results concerning diagnosis, treatment and management, and gaps in healthcare services bear out findings from previous research in the field [ 14 , 17 , 39 , 40 , 41 , 42 , 43 ], we have identified several issues less commonplace in the fibromyalgia literature. First, healthcare professionals’ possible bias about people with self-diagnosed fibromyalgia. Second, the substantial challenge facing general practitioners in the UK when seeking involvement of secondary care services for people with fibromyalgia. Third, the lack of available mental health and multidisciplinary holistic services in some regions to support people with fibromyalgia.

The findings of this study offer insights into access to healthcare for people with fibromyalgia in the UK and can be understood through the concept of candidacy. Candidacy encapsulates the processes through which a person’s eligibility for healthcare is jointly negotiated between individuals and health services [ 44 ]. These processes focus on recognition of a need for healthcare, navigation and permeability of services, presentation at services and the adjudications of healthcare professionals, offers of and resistance to care, and finally the local operating conditions through which candidacy is addressed [ 44 ]. Data from this study map to three elements of the candidacy framework in particular - presentation at services and the adjudications of healthcare professionals; permeability of services; and local operating conditions.

Presentation at healthcare services and the adjudications of professionals

The way in which patients present to healthcare services, and the judgements made by healthcare professionals about such presentations, influences the progression of candidacy [ 45 , 46 ]. Fibromyalgia is a stigmatising illness [ 47 ], shaped by societal attitudes about chronic pain and mental illness. Greater perceived stigma in people with chronic pain can heighten pain-related disability and distress [ 48 ], and affect presentation at services. Like others with invisible conditions, people with fibromyalgia commonly employ legitimacy narratives to communicate their illness, focused on symptoms and their impact, the struggle to complete everyday tasks and an inability to fulfil gender roles [ 49 ]. These narratives can be challenging to healthcare professionals in the absence of outward signs to substantiate such accounts and may lead to scepticism about symptom severity [ 50 , 51 ], suspicion that people with fibromyalgia are seeking secondary gain [ 51 , 52 ] or are ‘complaining women’ [ 52 ] or malingerers [ 53 ]. Such stereotypes can negatively impact patients through increased psychosocial stress [ 48 ] and healthcare professionals’ decisions about patient care [ 54 ] with potential for suboptimal management [ 55 ]. Data from interviews with healthcare professionals providing care for people with fibromyalgia suggest they may be reluctant to grant women with fibromyalgia sick leave, undertake avoidant-like behaviours to reduce contact with patients with fibromyalgia and request unnecessary investigations and treatments during interactions [ 50 , 52 ]. The finding of possible bias among healthcare professionals about people with self-diagnosed fibromyalgia is salient. While the effect of self-diagnosis on professional reactions and judgements is an under researched area [ 56 ], this prejudice is a potential concern given the lack of an objective test to diagnose fibromyalgia and the prevalence of self-diagnosis among the general population [ 57 , 58 ].

Permeability of services

The substantial challenge facing general practitioners in the UK when seeking access to support from secondary care services for people with fibromyalgia is a key finding of this research. Permeability of services reflects ease of access to care by those seeking it. Services such as hospital emergency departments are highly porous, while access to specialist services necessitates a referral and at least some agreement between referrer and provider about expectations of care [ 59 ]. Our data suggests that some NHS services in the UK are impervious to people with fibromyalgia, constituted by pressure to address core individual speciality work, local access polices, and a long-standing focus in NHS services on either physical or mental health. Fibromyalgia’s low prestige ranking is also likely to play a part [ 60 ].

Rheumatologists have traditionally ‘owned’ fibromyalgia [ 61 ]. Yet, some are reluctant to accept patients with fibromyalgia for care [ 17 , 62 ] and the argument for diagnosis and treatment of people with fibromyalgia outwith rheumatology services is growing [ 61 , 63 ]. UK national audits show rheumatology services face challenges meeting quality standards for people with early inflammatory arthritis [ 64 , 65 ] and recent guidance published by the national Getting It Right First Time (GIRFT) programme [ 66 ] recommends that care for people with fibromyalgia should be provided in primary and community settings. Going forward, it is likely that UK rheumatology services will become less permeable to people with fibromyalgia, with implications for patients and healthcare professionals, notably in general practice. Alongside this are reports that some physiotherapy services may be impenetrable to people with fibromyalgia. This is surprising given that physiotherapists are a professional group to which people with fibromyalgia are commonly referred [ 14 , 67 ]. Speculatively, reduced permeability of these services could align with a discourse of self-management [ 68 ] and physiotherapists’ concern about perpetuating dependence on care [ 51 ]. Understanding more about non-physician’s views and perceptions about access to care for people with fibromyalgia may be beneficial.

Neal [ 42 ] argues that psychiatrists might take responsibility for the care of people with fibromyalgia. Around 50–70% of people with persistent physical symptoms have comorbid mental health problems [ 69 , 70 ] yet some of the NHS professionals in our study reported a diagnosis of fibromyalgia is a barrier to accessing mental health services. Röhricht and Elanjithara [ 71 ] suggest that a focus on severe mental illness in secondary care mental health services means that provision for people with persistent physical symptoms in these settings is rare. A study exploring entry criteria to UK NHS adult mental health services, showed that diagnoses are inefficient proxies for risk, severity and need [ 72 ].

Local context

Local availability of suitable NHS healthcare services is fundamental in addressing candidacy [ 44 , 73 ]. Yet the lack of available multidisciplinary holistic services, psychological services, community-based services to support people in self-management and appropriately skilled staff to meet patient need, are substantial barriers to better outcomes for people with fibromyalgia and opportunities to reduce health service costs. The predominant symptom in people with fibromyalgia is persistent multisite pain [ 9 ], however, the most recent Health Survey for England undertaken in 2017 showed that only half of respondents with persistent pain and high interference in usual daily activities had seen a pain specialist [ 74 ]. Specialist pain clinics in England and Wales see around 0.4% of the total national population, but not all are multidisciplinary, and fewer than two thirds offer a pain management programme [ 75 ]. Provision of pain management programmes in Ireland is patchy with long waits for access [ 76 ], while in Scotland, programmes run in 10 of the 14 health boards [ 77 ]. Alongside specialist pain services are services for people with persistent physical symptoms (also referred to as medically unexplained symptoms (MUS)), under which people with fibromyalgia fall. However, multidisciplinary teams providing MUS services, particularly in primary care, are uncommon and provision across all sectors of the health service is inadequate for need [ 78 ].

New initiatives to fill gaps in the provision of psychological services (such as England’s improving access to psychological therapies-long term condition (IAPT-LTC) programme [ 70 ]), and policy mandates to build collaborations between health services and the voluntary, community and social enterprise (VCSE) sector [ 79 ] to ensure service coverage, may go some way to address the needs of people with fibromyalgia. However, the complexity of mental health needs, inadequate confidence and expertise in general practice to manage such complexity, limited access to secondary care mental health services because of inclusion thresholds, and demand and fiscal challenges facing the VCSE sector as a result of the COVID-19 pandemic [ 80 , 81 ], means that these will only be one part of the solution.

Study limitations

The findings of this study should be considered in the light of its strengths and weaknesses. A key strength is that survey A was widely distributed to NHS organisations and professional bodies across the UK and responses were received from a broad range of NHS professionals involved in care for people with fibromyalgia. The main weaknesses of our study include the unknown representativeness of our survey populations and self-selection bias. Convenience samples may have led to under and over coverage; people with access to the internet could respond to Survey B and the questionnaire was in English. Additionally, healthcare professionals sufficiently interested in care organisation and delivery for people with fibromyalgia may have participated. Furthermore, no IP addresses were collected, so it is possible that the survey was accessed more than once by the same user. Despite these limitations, this study provides insight into accessing fibromyalgia services in the UK from the perspective of NHS professionals and people with fibromyalgia and builds on current knowledge.

Our study has highlighted problems widely across the NHS in service provision and access for people with fibromyalgia in the UK, including several issues less commonly discussed: potential bias among healthcare professionals about people with self-diagnosed fibromyalgia; challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia; and the lack of available mental health and multidisciplinary holistic services to support those affected. Changes in services occurring as a result of the COVID-19 pandemic is likely only to have exacerbated the issues found through this research. There is a need to co-design and implement integrated services that offer people with fibromyalgia timely access to healthcare professionals with expert knowledge of fibromyalgia and a holistic management plan focussed towards long-term self-management. It will be important to consider patient choice in the mode of service delivery along with cost and scalability to ensure access for those in need of support. Developing new models of care for people with fibromyalgia in primary and community care could offer opportunities to address many of the issues presented in this study.

Availability of data and materials

The datasets used and analysed during this study are not publicly available due to the specific nature of responses from healthcare professionals and people with fibromyalgia, but they are available from the corresponding author on reasonable request.

Dupuytren’s contracture is a thickening of the tissues of the palm and can result in clawing of the fingers.

Rivera J, Rejas J, Esteve-Vives J, Vallejo MA, and the ICAF Group. Resource utilisation and health care costs in patients diagnosed with fibromyalgia in Spain. Clin Exp Rheumatol. 2009;27(Suppl.56):S39–45.

CAS   PubMed   Google Scholar  

Haviland MG, Banta JE, Przekop P. Hospitalisation charges for fibromyalgia in the United States, 1999-2007. Clin Exp Rheumatol. 2012;30(Suppl.74):S129–S35.

Google Scholar  

Gendelman O, Shapira R, Tiosano S, Kuntzman Y, Tsur AM, Hakimian A, et al. Utilisation of healthcare services and drug consumption in fibromyalgia: A cross-sectional analysis of the Clalit health service database. Int J Clin Pract. 2021;75:e14729.

Article   CAS   PubMed   Google Scholar  

Soni A, Santos-Paulo S, Segerdahl A, Javid MK, Pinedo-Villanueva R, Tracey I. Hospitalization in fibromyalgia: a cohort-level observational study of in-patient procedures, costs and geographical variation in England. Rheumatology (Oxford). 2020;59:2074–84.

Article   CAS   Google Scholar  

Fitzcharles MA, Ste-Marie PA, Goldenberg DL, Pereira JX, et al. Canadian Pain Society and Canadian rheumatology association recommendations for rational care of persons with fibromyalgia. A Summary Report. J Rheumatol. 2013;40:1388–93.

Article   PubMed   Google Scholar  

Clauw DJ. Fibromyalgia: a clinical review. JAMA. 2014;311:1547–55.

Article   PubMed   CAS   Google Scholar  

Arnold LM, Gebke KB, Choy EHS. Fibromyalgia: management strategies for primary care providers. Int J Clin Pract. 2016;70:99–112.

Häuser W, Sarzi-Puttini P, Fitzcharles MA. Fibromyalgia syndrome: under-, over-and misdiagnosis. Clin Exp Rheumatol. 2019;37(Suppl 116):S90–7.

Häuser W, Zimmer C, Felde E, Köllner V. What are the key symptoms of fibromyalgia? Results of a survey of the German fibromyalgia association. Schmerz. 2008;22:176–83.

Fitzcharles MA, Perrot S, Häuser W. Comorbid fibromyalgia: a qualitative review of prevalence and importance. Eur J Pain. 2018;22:1565–76.

Galvez-Sánchez CM, Reyes Del Paso GA. Diagnostic criteria for fibromyalgia: critical review and future perspectives. J Clin Med. 2020. https://doi.org/10.3390/jcm9041219 .

Arnold LM, Clauw DJ, Dunegan LJ, Turk DC, FibroCollaborative. A framework for fibromyalgia management for primary care providers. Mayo Clin Proc. 2012;87:488–96.

Article   PubMed   PubMed Central   Google Scholar  

Macfarlane GJ, Kronisch C, Dean LE, Atzeni F, Häuser W, Fluß E, et al. EULAR revised recommendations for the management of fibromyalgia. Ann Rheum Dis. 2017;76:318–28.

Kroese ME, Schulpen GJ, Sonneveld HM, Vrijhoef HJ. Therapeutic approaches to fibromyalgia in the Netherlands: a comparison between 1998 and 2005. J Eval Clin Pract. 2008;14:321–5.

Robinson RL, Kroenke K, Mease P, Williams DA, Chen Y, D’Souza D, et al. Burden of illness and treatment patterns for patients with fibromyalgia. Pain Med. 2012;13:1366–76.

Liu Y, Qian C, Yang M. Treatment patterns associated with ACR-recommended medications in the Management of Fibromyalgia in the United States. J Manag Care Spec Pharm. 2016;22:263–71.

Agarwal A, Oparin Y, Glick L, Fitzcharles MA, Adachi JD, Cooper MD, et al. Attitudes toward and Management of Fibromyalgia. A National Survey of Canadian rheumatologists and critical appraisal of guidelines. J Clin Rheumatol. 2018;24:243–9.

Rico-Villademoros F, Postigo-Martin P, Garcia-Leiva JM, Ordoñez-Carrasco JL, Calandre EP. Patterns of pharmacologic and non-pharmacologic treatment, treatment satisfaction and perceived tolerability in patients with fibromyalgia: a patients’ survey. Clin Exp Rheumatol. 2020;38(Suppl 123):S72–8.

Doebl S, Macfarlane GJ, Hollick RJ. ‘No one wants to look after the fibro patient’. Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence. Pain. 2020;161:1716–25.

Lempp HK, Hatch SL, Carville SF, Choy EH. Patients' experiences of living with and receiving treatment for fibromyalgia syndrome: a qualitative study. BMC Musculoskelet Disord. 2009;10:124.

Patient and Client Council. A hidden condition. Ten people living with fibromyalgia tell their story. 2016. https://patientclientcouncil.hscni.net/wpfd_file/a-hidden-condition/ Accessed 8 July 2020.

Ashe SC, Furness PJ, Taylor SJ, Haywood-Small S, Lawson K. A qualitative exploration of the experiences of living with and being treated for fibromyalgia. Health Psychol Open. 2017. https://doi.org/10.1177/2055102917724336 .

Baxter S, Johnson M, Chambers D, Sutton A, Goyder E, Booth A. The effects of integrated care: a systematic review of UK and international evidence. BMC Health Serv Res. 2018;18:350.

Glaser BG. The constant comparative method of qualitative analysis. Soc Probl. 1965;12:436–45.

Article   Google Scholar  

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.

Eysenbach G. Improving the quality of web surveys: the checklist for reporting results of internet E-surveys (CHERRIES). J Med Internet Res. 2004;6:e34.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. 2010;62:600–10.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RL, et al. Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Semin Arthritis Rheum. 2016;46:319–29.

Arnold LM, Bennett RM, Crofford LJ, Dean LE, Clauw DJ, Goldenberg DL, et al. AAPT diagnostic criteria for fibromyalgia. J Pain. 2019;20:611–28.

Jutel AG. Putting a name to it. Diagnosis in contemporary society. Baltimore: John Hopkins University Press; 2011.

Rasmussen EB. Balancing medical accuracy and diagnostic consequences: diagnosing medically unexplained symptoms in primary care. Sociol Health Illn. 2017;39:1227–41.

Iezzoni LI. Dangers of diagnostic overshadowing. N Engl J Med. 2019;380:2092–3.

Davies AF, Hill P, Fay D, Dee A, Locher C. Body reprogramming: reframing the fibromyalgia narrative and providing an integrative therapeutic model. Health Psychol Open. 2020. https://doi.org/10.1177/2055102920971494 .

Mengshoel AM, Sim J, Ahlsen B, Madden S. Diagnostic experience of patients with fibromyalgia- A meta-ethnography. Chronic Illn. 2018;14:194–211.

Doebl S, Hollick RJ, Beasley M, Choy E, Macfarlane GJ. PACFiND study investigators. Comparing people who have and have not received a diagnosis of fibromyalgia: a cross-sectional survey within the PACFiND study. Arthritis Care Res. 2021. https://doi.org/10.1002/acr.24723 .

Centre for policy on ageing. The effectiveness of care pathways in health and social care. 2014; http://www.cpa.org.uk/information/reviews/CPA-Rapid-Review-Effectiveness-of-care-pathways.pdf . Accessed 24 Oct 2021.

Freidson E. The changing nature of professional control. Annu Rev Sociol. 1984;10:1–20.

Taylor S, Steer M, Ashe SC, Furness PJ, Haywood-Small S, Lawson K. Patients’ perspective of the effectiveness and acceptability of pharmacological and non-pharmacological treatments of fibromyalgia. Scand J Pain. 2019;19:167–81.

Kumbhare D, Ahmed S, Sander T, Grosman-Rimon L, Srbely J. A survey of physicians’ knowledge and adherence to the diagnostic criteria for fibromyalgia. Pain Med. 2018;19:1254–64.

Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. Survey of physician experiences and perceptions about the diagnosis and treatment of fibromyalgia. BMC Health Serv Res. 2012;12:356.

Busse JW, Kulkarni AV, Badwall P, Guyatt GH. Medically unexplained syndromes study group. Attitudes towards fibromyalgia: a survey of Canadian chiropractic, naturopathic, physical therapy and occupational therapy students. BMC Complement Altern Med. 2008;8:24.

Neal LA. Fibromyalgia: psychiatrists should now be picking up the baton. Psychiatrist. 2011;35:190–1.

Briones-Vozmediano E, Vives-Cases C, Ronda-Pérez E, Gil-González D. Patients’ and professionals’ views on managing fibromyalgia. Pain Res Manag. 2013;18:19–24.

Dixon-Woods M, Cavers D, Agarwal S, Annandale E, Arthur A, Harvey J, et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol. 2006;6:35.

Schulman KA, Berlin JA, Hareless W, Kerner JF, Sistrunk S, Gersh BJ, et al. The effect of race and sex on physicians’ recommendations for cardiac catheterisation. N Engl J Med. 1999;340:618–26.

Anastas TM, Miller MM, Hollingshead NA, Stewart JC, Rand KL, Hirsh AT. The unique and interactive effects of patient race, patient socioeconomic status, and provider attitudes on chronic pain care decisions. Ann Behav Med. 2020;54:771–82.

Ko C, Lucassen P, van der Linden B, Ballering A, Olde HT. Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – a systematic review. J Psychosom Res. 2022;154:110715.

Bean DJ, Dryland A, Rashid U, Tuck NL. The determinants and effects of chronic pain stigma: A mixed methods study and the development of a model. J Pain. 2022. https://doi.org/10.1016/j.jpain.2022.05.006 .

Paxman CG. “Everyone thinks I am just lazy”: legitimacy narratives of Americans suffering from fibromyalgia. Health (London). 2021;25:121–37.

Åsbring P, Närvänen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003;57:711–20.

Roitenberg N, Shoshana A. Physiotherapists’ accounts of fibromyalgia: role-uncertainty and professional shortcomings. Disabil Rehabil. 2021;43:545–52.

Briones-Vozmediano E, Öhman A, Goicolea I, Vives-Cases C. “The complaining women”: health professionals’ perceptions on patients with fibromyalgia in Spain. Disabil Rehabil. 2018;40:1679–85.

Hayes SM, Myhal GC, Thornton JF, Camerlain M, Jamison C, Cytryn KN, et al. Fibromyalgia and the therapeutic relationship: where uncertainty meets attitude. Pain Res Manag. 2010;15:385–91.

Hajjaj FM, Salek MS, Basra MKA, Finlay AY. Non-clinical influences on clinical decision making: a major challenge to evidence-based practice. J R Soc Med. 2010;103:178–87.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Zestcott CA, Blair IV, Stone J. Examining the presence, consequences, and reduction of implicit bias in health care: a narrative review. Group Process Intergroup Relat. 2016;19:528–42.

Farnood A, Johnston B, Mair FS. A mixed methods systematic review of the effects of patient online self-diagnosing in the ‘smart-phone society’ on the healthcare professional - patient relationship and medical authority. BMC Med Inform Decis Mak. 2020;20:253.

Kuehn BM. More than one-third of US individuals use the internet to self-diagnose. JAMA. 2013;309:756–7.

Robinson J. Over half of adults in Great Britain self-diagnose, reveals RPS survey. Pharm J. https://pharmaceutical-journal.com/article/news/over-half-of-adults-in-great-britain-self-diagnose-reveals-rps-survey Accessed 6 Nov 2021.

Koehn S. Negotiating candidacy: ethnic minority seniors’ access to care. Ageing Soc. 2009;29:585–608.

Album D, Johannessen LEF, Rasmussen EB. Stability and change in disease prestige: A comparative analysis of three surveys spanning a quarter of a century. Soc Sci Med. 2017;180:45–51.

Shir Y, Fitzcharles MA. Should rheumatologists retain ownership of fibromyalgia (editorial). J Rheumatol. 2009;36:667–70.

Aloush V, Niv D, Ablin JN, Yaish I, Elkayam O, Elkana O. Good pain, bad pain: illness perception and physician attitudes towards rheumatoid arthritis and fibromyalgia patients. Clin Exp Rheumatol. 2021;39(Suppl 130):S54–60.

Pang HYM, Farrer C, Wu W, Gakhal NK. Quality of rheumatology care for patients with fibromyalgia and chronic pain syndromes. BMJ Open Qual. 2021;10:e001061.

British Society of Rheumatology (BSR). National Early Inflammatory Arthritis Audit (NEIAA) 1st Annual Report (Data collection: 8 May 2018–7 May 2019). 2019. https://www.rheumatology.org.uk/Portals/0/Documents/Practice_Quality/Audit/NEIA/2019/NEIA_Audit_report_October_2019.pdf?ver=2019-10-08-103326-710 Accessed 25 Oct 2021.

British Society of Rheumatology (BSR). National Early Inflammatory Arthritis Audit (NEIAA) 2nd Annual Report (Data collection: 8 May 2019–7 May 2020). 2021. https://www.hqip.org.uk/wp-content/uploads/2021/01/NEIAA_Clinician-Second-Annual-Report.pdf Accessed 25 Oct 2021.

Kay L, Lanyon P, MacGregor A. Rheumatology GIRFT Programme National Specialty Report 2021. https://www.gettingitrightfirsttime.co.uk/wp-content/uploads/2021/08/Rheumatology-Jul21h-NEW.pdf . Accessed 1 Dec 2021.

Sim J, Adams N. Therapeutic approaches to fibromyalgia syndrome in the United Kingdom: a survey of occupational therapists and physical therapists. Eur J Pain. 2003;7:173–80.

Kendall E, Rogers A. Extinguishing the social?: state sponsored self-care policy and the chronic disease self-management programme. Disabil Soc. 2007;2:129–43.

Husain M, Chalder T. Medically unexplained symptoms: assessment and management. Clin Med. 2021;21:13–8.

NHS England and NHS Improvement. The improving access to psychological therapies (IAPT) pathway for people with long-term physical health conditions and medically unexplained symptoms. 2018. https://www.england.nhs.uk/wp-content/uploads/2018/03/improving-access-to-psychological-therapies-long-term-conditions-pathway.pdf Accessed 6 Nov 2021.

Röhricht F, Elanjithara T. Management of medically unexplained symptoms: outcomes of a specialist liaison clinic. Psychiatr Bull. 2014;38:102–7.

Allsopp K, Kinderman P. The use of diagnoses in mental health service eligibility and exclusion criteria. J Ment Health. 2021;30:97–103.

Fuat A, Hungin APS, Murphy JJ. Barriers to accurate diagnosis and effective management of heart failure in primary care: qualitative study. BMJ. 2003;326:196.

Public Health England. Chronic pain in adults 2017 health survey for England. 2020; https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/940858/Chronic_Pain_Report.pdf Accessed 6 Nov 2021.

Price C, de C Williams AC, Smith BH, Bottle A. The National Pain Audit for specialist pain services in England and Wales 2010–2014. Br J Pain. 2019;13:185–93.

Purcell A, Channappa K, Moore D, Harmon D. A national survey of publicly funded chronic pain management services in Ireland. Ir J Med Sci. 2021. https://doi.org/10.1007/s11845-021-02673-5 .

Mellor R, The Chronic Pain Project Group. Health care needs assessment of adult chronic pain services in Scotland: Scottish Public Health Network (ScotPHN); 2018. https://www.scotphn.net/wp-content/uploads/2017/04/2018_10_11-Chronic-pain-HNA-Final.pdf Accessed 6 Nov 2021

Joint Commissioning Panel for Mental Health. Guidance for commissioners of services for people with medically unexplained symptoms. 2017; https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf Accessed 6 Nov 2021.

NHS England and NHS Improvement. Building strong integrated care systems everywhere. ICS implementation guidance on partnerships with the voluntary, community and social enterprise sector. 2021; https://www.england.nhs.uk/wp-content/uploads/2021/06/B0905-vcse-and-ics-partnerships.pdf Accessed 14 Dec 2021.

Naylor C, Bell A, Baird B, Heller A, Gilburt H. Mental health and primary care networks. Understanding the opportunities 2020; https://www.kingsfund.org.uk/sites/default/files/2020-07/Mental%20Health%20and%20PCNs%20online%20version_1.pdf Accessed 5 Nov 2021.

Nottingham Trent University, Sheffield Hallam University, National Council for Voluntary Organisations. Respond, recover, reset: the voluntary sector and COVID-19. 2021; http://cpwop.org.uk/wp-content/uploads/sites/3/2021/12/RRR-Report-Dec-2021.pdf Accessed 14 Dec 2021.

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Acknowledgements

We are grateful for the input of Fibromyalgia Action UK to this programme of work and for patient partner Simon Stones. The authors do not report any conflict of interest. The PACFiND study investigators are (in addition to authors NW, CP, RJH, GJM): Professor Corri Black, Professor Gareth T Jones, Professor Louise Locock, Dr. Sara J MacLennan, Professor Paul McNamee, Dr. Kathyrn R. Martin, Dr. Peter Murchie (all University of Aberdeen), Professor Sue Ziebland (University of Oxford), Professor Karen Walker-Bone (University of Southampton), Professor Chris Eccleston (University of Bath), Professor Ernest Choy (Cardiff University), Professor David A. Williams (University of Michigan), Professor Neil Basu (University of Glasgow).

The PACFiND programme of work is funded by Versus Arthritis (Grant No. 21958).

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Nicky Wilson

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Marcus J. Beasley, Laura J. Moir, Rosemary J. Hollick & Gary J. Macfarlane

Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK

Catherine Pope

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Conceptualisation and funding acquisition: GJM, RJH, CP, NW formulated the overarching research goals and aims of the study. GJM, RJH, CP and NW, along with the PACFiND study investigators listed in the acknowledgements, obtained financial support for the programme of work of which the study is part. Investigation: NW, CP and DD developed the questionnaires. MJB, NW and LJM administered the surveys and collected data. Formal analysis: MJB undertook analysis of quantitative data. NW undertook analysis of quantitative and qualitative data. GJM oversaw the quantitative analysis and contributed to the interpretation. Writing: NW wrote the original draft. Review and editing: CP, DD, GJM, LJM, MJB and RJH provided critical review and comment. All authors read and approved the final manuscript.

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Correspondence to Nicky Wilson .

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The Health Research Authority (HRA) confirmed survey A was not considered to be research and did not require review by an NHS Research Ethics Committee. Nevertheless, survey A was registered as a service evaluation with NHS Grampian (Project ID 4679). The design of Survey B was approved by the University of Aberdeen School of Medicine, Medical Sciences and Nutrition Ethics Review Board (CERB/2019/11/1805). Informed consent was obtained from all participants included in this study. All methods were carried out in accordance with relevant guidelines and regulations.

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Wilson, N., Beasley, M.J., Pope, C. et al. UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study). BMC Health Serv Res 22 , 989 (2022). https://doi.org/10.1186/s12913-022-08324-4

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Fibromyalgia may be a condition of the immune system not the brain – study

New research challenges widely held view of the condition and could pave way for better treatment

Fibromyalgia – a poorly understood condition that causes widespread pain throughout the body and extreme tiredness – may be caused by be an autoimmune response that increases the activity of pain-sensing nerves throughout the body.

The findings, published in the Journal of Clinical Investigation , challenge the widely held view that the condition originates in the brain, and could pave the way for more effective treatments for the millions of people affected.

They could also have implications for patients suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and “long Covid”. “These different syndromes are symptomatically very similar, so I think it could be very relevant to both of these conditions,” said Dr David Andersson from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, who led the new study.

Fibromyalgia affects at least 1 in 40 people worldwide, although some estimates suggest nearly 1 in 20 people may be affected to some degree. It is characterised by widespread pain and crippling fatigue – often referred to as “fibro fog” – and usually develops between the ages of 25 and 55, although children can also get it. Similar to many autoimmune conditions, the vast majority of those affected (80% are women).

Current treatment tends to focus on gentle aerobic exercise, as well as drug and psychological therapies designed to manage pain. However, these have proven ineffective in most patients and have left behind an enormous unmet clinical need, said Andersson. “The widespread paradigm at the moment is that this is a disease that emanates from the brain, and I think our findings suggest that that’s not the case,” he said.

The development of new therapies has also been hampered by a limited scientific understanding of what causes the condition in the first place, but this could change with the discovery that the immune system is involved.

Andersson and his colleagues harvested blood from 44 people with fibromyalgia and injected purified antibodies from each of them into different mice. The mice rapidly became more sensitive to pressure and cold, and displayed reduced grip strength in their paws. Animals injected with antibodies from healthy people were unaffected.

Prof Camilla Svensson from the Karolinska Institute in Sweden, who was also involved in the study, said: “Antibodies from people with fibromyalgia living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings.”

The mice recovered once the antibodies had been cleared from their systems, which took a few weeks. This suggests that therapies such as plasma-exchange, which are designed to reduce antibody levels and are available for other autoimmune disorders, such as myasthenia gravis, may be effective in fibromyalgia patients.

“Establishing that fibromyalgia is an autoimmune disorder will transform how we view the condition and should pave the way for more effective treatments for the millions of people affected,” Andersson said. “Our work has uncovered a whole new area of therapeutic options and should give real hope to fibromyalgia patients.

The next step will be to identify what factors the symptom-inducing antibodies bind to, said Svensson: “This will help us not only in terms of developing novel treatment strategies for fibromyalgia, but also of blood-based tests for diagnosis, which are missing today.”

Anderson said he also hoped to conduct similar experiments using antibodies harvested from people with ME/CFS and long Covid.

Des Quinn, the chair of Fibromyalgia Action UK, said: “The prospect of fibromyalgia being an autoimmune condition has been debated many times and this will add to that discussion. If these results can be replicated and expanded upon, then the prospect of a new treatment for people with fibromyalgia would be extraordinary. However, the results need further confirmation and investigation before the outcomes can be applied universally.”

It would also be interesting to investigate how these findings relate to other symptoms of fibromyalgia, such as fatigue, sleep disturbance, and cognitive issues, he added.

• Fibromyalgia

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New Research Shows Fibromyalgia Is Likely the Result of Autoimmune Problems

By King's College London August 18, 2021

Fibromyalgia, or fibromyalgia syndrome, is a condition that causes aches and pain all over the body.

New research has shown that many of the symptoms in fibromyalgia syndrome are caused by antibodies that increase the activity of pain-sensing nerves throughout the body.

New research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, in collaboration with the University of Liverpool and the Karolinska Institute, has shown that many of the symptoms in fibromyalgia syndrome (FMS) are caused by antibodies that increase the activity of pain-sensing nerves throughout the body.

The results show that fibromyalgia is a disease of the immune system, rather than the currently held view that it originates in the brain.

The study, published in the Journal of Clinical Investigation , demonstrates that the increased pain sensitivity, muscle weakness, reduced movement, and reduced number of small nerve fibers in the skin that are typical of FMS, are all a consequence of patient antibodies.

“The implications of this study are profound. Establishing that fibromyalgia is an autoimmune disorder will transform how we view the condition and should pave the way for more effective treatments for the millions of people affected. Our work has uncovered a whole new area of therapeutic options and should give real hope to fibromyalgia patients. Previous exploration of therapies has been hampered by our limited understanding of the illness. This should now change. Treatment for FMS is focussed on gentle aerobic exercises, as well as drug and psychological therapies designed to manage pain, although these have proven ineffective in most patients and have left behind an enormous unmet clinical need.” – Dr. David Andersson, study primary investigator, King’s College London

The researchers injected mice with antibodies from people living with FMS and observed that the mice rapidly developed an increased sensitivity to pressure and cold, as well as displaying reduced movement grip strength. In contrast, mice that were injected with antibodies from healthy people were unaffected, demonstrating that patient antibodies cause, or at least are a major contributor to the disease.

Furthermore, the mice injected with fibromyalgia antibodies recovered after a few weeks, when antibodies had been cleared from their system. This finding strongly suggests that therapies which reduce antibody levels in patients are likely to be effective treatments. Such therapies are already available and are used to treat other disorders that are caused by autoantibodies.

Current estimates suggest that at least 1 in 40 people are affected by FMS worldwide (80% of which are women) and is commonly characterized by widespread pain throughout the body, as well as fatigue (often referred to as ‘fibro fog’) and emotional distress. It most commonly develops between the ages of 25 and 55, although children can also get it.

Dr. Andreas Goebel, the study’s principal clinical investigator from the University of Liverpool said, “When I initiated this study in the UK, I expected that some fibromyalgia cases may be autoimmune. But David’s team has discovered pain-causing antibodies in each recruited patient. The results offer amazing hope that the invisible, devastating symptoms of fibromyalgia will become treatable.”

Professor Camilla Svensson, the study’s primary investigator from Karolinska Institute said, “Antibodies from people with FMS living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings. The next step will be to identify what factors the symptom-inducing antibodies bind to. This will help us not only in terms of developing novel treatment strategies for FMS, but also of blood-based tests for diagnosis, which are missing today.

Dr. Craig Bullock, Research Discovery and Innovations Lead at Versus Arthritis said “Fibromyalgia affects millions of people in the UK and can have a devastating impact on quality of life. It causes pain all over the body, fatigue, disturbed sleep, and regular flare-ups where symptoms get even worse.

“Fibromyalgia is a particularly difficult condition to diagnose and manage because its causes are unknown. This research shows that antibodies found in human blood can cause fibromyalgia-like symptoms in mice, suggesting that these antibodies play a crucial role in the condition. Further research is needed but this offers hope to the millions of people with fibromyalgia that an effective treatment could be found in the relatively near future.”

Reference: “Passive transfer of fibromyalgia symptoms from patients to mice” by Andreas Goebel, Emerson Krock, Clive Gentry, Mathilde R. Israel, Alexandra Jurczak, Carlos Morado Urbina, Katalin Sandor, Nisha Vastani, Margot Maurer, Ulku Cuhadar, Serena Sensi, Yuki Nomura, Joana Menezes, Azar Baharpoor, Louisa Brieskorn, Angelica Sandström, Jeanette Tour, Diana Kadetoff, Lisbet Haglund, Eva Kosek, Stuart Bevan, Camilla I. Svensson and David A. Andersson, 1 July 2021, The Journal of Clinical Investigation . DOI: 10.1172/JCI144201

This study was possible thanks to funding from the Medical Research Council (UK), Versus Arthritis, the Liverpool Pain Relief Foundation, the Swedish Research Council, the Knut and Alice Wallenberg Foundation, a donation from the Lundblad Family for clinical pain research at Karolinska Institute, and other agencies.

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Flo Stops the Leaks in Her Boat at Last: Her Long ME/CFS/FM Recovery Story

by Cort Johnson | Apr 14, 2023 | Autoimmune , Fibromyalgia and Pain , Gene expression , Homepage , Immune , ME/CFS , Monocytes , Muscles , Research | 23 comments

ME/CFS and FM Moments?

Taking it to the next level for ME/CFS and FM?

I think of “moments” as unusual events that suggest the tide may be turning for these common but sorely neglected diseases.

Health Rising has documented several possible ME/CFS “moments” over the past two years and now we have one for fibromyalgia.

The first ME/CFS moment was a big win for Ron Davis – one of the greatest grant recipients in all of medicine – that is, until he tried to get them for ME/CFS – and ran into roadblock after roadblock. One wonders if Davis’s big 2022 win indicates that grant funders are taking ME/CFS more seriously. On that note, the Congressionally Directed Medical Research Program ME/CFS recently put ME/CFS grants into the priority column – another possible “ME/CFS moment”.

Ron Davis’s ME/CFS Moment: The “Core Technology Disrupter” Gets a Win

In May of 2022, Health Rising reported that both Bateman Horne Center and Benjamin Natelson were up to their ears with work. After a dry spell, Natelson was suddenly scoring grant after grant and the BHC was up to its neck in clinical trials.

Is ME/CFS Having A Moment? An ME/CFS Researcher and an ME/CFS Clinic Go Gangbusters

Next, came probably the most astonishing moment yet. Perhaps the most single most backward and despised medical group in the entire country – the Mayo Clinic –  apparently had something of a come-to-Jesus moment – and actually asked MEAction to help them develop a better ME/CFS treatmen t program. That was surely a sign that things were changing.

We could slide the integration of ME/CFS into the CDC-funded ECHO program on treating long COVID into the ME/CFS moment category. That, after all, resulted in physicians across the country learning about both long COVID and other fatiguing illnesses (like ME/CFS). Getting the CARE for LONG COVID bill – which includes ME/CFS in it – would certainly constitute an ME/CFS moment as it would speed about $100 million into better education for doctors, treatment assessments, and patient registries for both diseases. Ditto with the strategic plan for ME/CFS that’s underway at the NIH. If that goes over well and ends up with better funding for ME/CFS – that would certainly qualify as an ME/CFS moment. We may be having ME/CFS moments coming out of our ears at some point…

Hanson ME/CFS Research Group Grant

First comes the big grant that the Hanson ME/CFS research Center for Enervating Neuroimmune Disease at Cornell just scored – a nice, large $9.5 million grant over five years.

One thing that made this grant so special was where it came from – one of the three NIH-funded ME/CFS research centers. This grant is further evidence that these centers work (and should be expanded). They’ve shown that given sufficient funds, ME/CFS researchers can produce meaningful results and that ME/CFS is not an impenetrable disease.

Considered by some to be a wastebasket disease not worth studying, these big, high-powered NIH-funded studies are proving that idea a lie. As Andrew Grimson , one of the Cornell researchers, said – they took a broad approach – and lo and behold, specific molecular targets popped out.

“We took a broad interdisciplinary approach, with the hope that we would find specific molecular changes in ME/CFS; now that we have found these changes, we can target our research on these changes and understand their impact, ultimately moving towards a cure,”

The grant will focus on three aspects.

Monocytes – Grimson’s NIH-funded study was eye-opening, indeed. Using a fine-tuned gene expression approach new to ME/CFS, Grimson’s results potentially turned our understanding of ME/CFS patients’ immunology on its head.

None of the usual suspects – the NK cells, T- or B-cells – popped out, instead it was monocytes – a cell we’ve hardly ever heard of in connection with ME/CFS. The amazing thing was how strongly they showed up – they were clearly leading the show – and that’s good news. Strong findings like that provide clarity – a clear angle of attack. Given all the disparate immune findings in ME/CFS, having one cell show up big time like that was good news indeed.

Move Over NK, T and B-cells. Are Monocytes the Real Problem in ME/CFS?

Muscle Biopsy – Next, a deep, deep, deep dive into the muscles. Anyone who’s had ME/CFS would be shocked, I would bet, if the muscles weren’t involved in a major way – yet they’ve never been examined as deeply as they should be. ME/CFS muscle research is a glaring need.

In this project, Ben Cosgrove , and Iwijn De Vlaminck , will use a new machine to take detailed gene expression analyses in different parts of the muscle tissue that could potentially locate the exact cells where things have gone haywire . They’ll also look at the gene expression in muscle fibers, blood vessels, and immune cells.

Exercise Study – You would have thought ,given all the fascinating exercise results from Hanson’s NIH-funded ME/CFS research studies, that an exercise study had to be in here somewhere – and it is.

Among other things, those studies found dramatic reductions in the production of metabolites and proteins in ME/CFS patients vs healthy controls. This study will analyze RNA released into blood plasma when cells die, before and after exercise, as people with ME/CFS respond abnormally – and adversely – to exercise. This study will further the protein work and further assess the effect of exercise on gene expression. They will also analyze the extracellular vesicles from platelets, neuronal cells, and blood vessel cells.

Update! – I got this wrong. Because the grant announcement never mentioned the NIH ME/CFS Centers I assumed this was a separate grant. It was not – this is the Centers grant and as such, while it is an excellent grant, it was expected – and thus does not constitute an ME/CFS moment. 🙁

Fibromyalgia’s Moment

Further research is needed, but this offers hope to the millions of people with fibromyalgia that an effective treatment could be found in the relatively near future – Dr. Craig Bullock , Research Discovery and Innovations Lead at Versus Arthritis.

Fibromyalgia is potentially in the midst of its own paradigm-changing moment. It all started with Andersson and Goebel’s 2021 stunning study, “ Passive transfer of fibromyalgia symptoms from patients to mice “, which found that giving mice IgG antibodies basically gave them fibromyalgia – suggesting that fibromyalgia is an autoimmune disease. The consistency of the findings even surprised the researchers on the team. Andreas Goebel said:

 “When I initiated this study in the UK, I expected that some fibromyalgia cases may be autoimmune. But David’s team have discovered pain-causing antibodies in each recruited patient. The results offer amazing hope that the invisible, devastating symptoms of fibromyalgia will become treatable.”

That was just the beginning. Fibromyalgia has primarily been thought to be a central nervous system disease, but when the researchers looked deeper, they couldn’t find any evidence that antibodies had made their way to the central nervous system. Instead, they were concentrated and presumably attacking the major sensory processing center outside the spinal cord – the dorsal root ganglia. Suddenly, fibromyalgia was looking more like a disease of the periphery than a disease of the central nervous system. The fact that the study involved two separate FM groups – one from the UK and one from Sweden – further buttressed its findings.

Something in the Blood II: Long-COVID / Fibromyalgia Autoimmune Connection Found

• “Moments” are signs that a disease may be turning a corner. We’ve documented several possible  ME/CFS moments – Ron Davis’s big grant, a high workload for the Bateman Horne Center, Ben Natelson’s string of grants after a dry spell, the Mayo Clinic coming to MEAction to help them treat ME/CFS patients better. 
• Now comes two possible moments – one for ME/CFS and one for fibromyalgia. 
• The ME/CFS moment involves an immense grant that Maureen Hanson and her ME/CFS research got. It’s significant because it’s so large and because it grew out of NIH-funded ME/CFS research center work, and thus demonstrates how effective these research centers can be (and why we need more of them). 
• The grant will have three thrusts. One will follow up on the potentially ground-changing finding that it’s monocytes – not NK cells, T or B-cells – that are at the heart of the immune dysfunction in ME/CFS.
• Another will use new technology to uncover – on a cellular basis – where the muscles have been impacted in ME/CFS. The third will assess the effects of exercise on gene expression.
• The FM “moment” involves another potentially paradigm-changing study that could potentially turn the world of FM research and treatment on its head. This study will probe more deeply into the possibility that FM is an autoimmune disease caused by antibodies attacking the central sensory processing center (the dorsal root ganglia) leading to the spinal cord. A successful outcome would open up a wide range of treatment options never thought before to apply to FM. 

Next, they convened a group of 29 stakeholders (including 3 patients/caregivers) and produced a research strategy for fibromyalgia . Dozens of research projects were assessed. Of the top five recommendations, three involved antibodies.

Then in October 2022, Andersson and Goebel (and Schofield) argued in, “ The biology of symptom-based disorders – time to act “, that “symptom-based disorders are… very common, including pain and fatigue disorders, functional gastrointestinal and respiratory disorders” and “cause far greater disability than diseases where signs are prominent.” They urged funders to pour “resources into exploring the role of ‘invisible’, functional, non-inflammatory autoantibodies in symptom-based disorders”.

Andersson hit pay dirt this month when he won the Sir Jules Thorn Award for Biomedical Research, giving him and his co-investigators (including Goebel) £1,699,572 ($2,100,000) over five years.

Stating that, “These insights will fundamentally change future research and clinical management of FMS “, the award was very clear on the tremendous possibilities present. In an attempt to find a treatment target and biomarker, Andersson et al. will identify which molecules the patients’ autoantibodies are binding to (i.e. attacking). He will also dig deeper into what’s going on with the neurons that relay sensory information to the central nervous system and see how all this affects the central nervous system.

Time will tell if these are moments or not. Are the Ron Davis and Maureen Hanson awards harbingers of more funding? (Will Ian Lipkin and his peroxisomes get the next big grant?) Will the FM award end up reshaping how we think of fibromyalgia and open new treatment possibilities? Time will tell.

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Hope something out of this bunch can help those of us who have been sick for decades; thanks for the detailed recap – and your attention all these years.

Cort, you have never ceased to amaze me. I am so very grateful to know you. We live teetering on the edge of total despair, but holding on to a glimmer of hope during these times. I believe the pressure from our community is helping. I am so thankful for the ME CFS trailblazers, and I pray the suffering from ME CFS will be extinguished and the same will hold true for Fibromyalgia and Long Covid sufferers. Yes, the time is now, right now, even better.

Hope is all we have. I have great interest in the upcoming publications from Professor Nath and Dr. Prusty. I expect that a biomarker will emerge from 1 of these studies. But we’ve been disappointed for more than once in the past. But it’s good to read that more research is on the way.

Prusty seems very excited! Let’s hope that time shows that his excitement was justified and that he can garner the resources needed to turn it into something that benefits all of us.

I, too look forward to Nath’s paper with anticipation and a bit of dread actually – will it have powerful findings that help to propel this field forward and set us up for more big NIH grants? Time will tell….

yes, Prusty is verry convinced of his biomarker finding. II really hope he is correct with it. even a piece, a start would be great.

thanks again for the hope Cort! I really hope that they awake worldwide with tons of research!! biomarkers and treatments…

Thanks! Time will tell if the arc bends strongly enough to help those of who are getting on in years! 🙂

The approved therapy for fibromyalgia is not effective and has no effect on most people. They are about 10% stronger than placebo, which means they only have an effect on about 10% of the population.

My feeling is that due to the heterogeneity of FM, it is basically certain that some patients have immune factors, and the proportion may not be small.

It was so good to see Andresson get this big grant. This is a once a year grant and it’s not just for fibromyalgia. I’m sure the competition was rough. It certainly is a potential gamechanger for FM.

Thank you Cort! I would know considerly less without your blog. Science is beautiful!

Thanks for sharing the Fibromyalgia new,s as I am not up to date on that front. I read somewhere that some of the Hanson grant money has to go towards cancer research, is that true?

I can’t imagine why anyone would say that. Grant funds are strictly proscribed. The study is not yet up on the NIH’s project reporter site but should be soon

https://reporter.nih.gov/search/kkV_KHuqW0WTD38HPOu51Q/projects

Thanks a lot for clarifying. Seems like I had mixed up things quite a bit and it is the NIH that appears to be counting a $3.6 million study of cancer-related fatigue as part of its $13 million 2022 portfolio of ME/CFS spending which David Tuller seems to have exposed.

No kidding. I’ve got to check that out…

Thanks for the info. 🙂

Thx so much Cort. Ever bit of progress and hope is precious. My fibro has gotten much worse since having covid.

I hope they find the link between the two soon and can offer new treatments. It’s lonely having a mysterious illness and knowing more about developments than the doctors I see. Thank heavens for the support and wisdom of your blog and this group. I am so grateful.

I am a 26 year Fibromyalgia sufferer, a MSN/Researcher with pharmas. Also had Covid. Have seen little progress in treatment over this many years. But have had a number of gifted physicians willing to step outside the box. I pray this a really positive move forward in discovery and cure of this life altering disease.

Another wonderful story filled with hope! Thank you!

Here is a related article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7787228/

Dorsal Root Ganglia: fibromyalgia pain factory?

This perspective article focuses on dorsal root ganglia (DRG) as potential fibromyalgia main pain source. Humans possess 31 pairs of DRG lying along the spine. These ganglia have unique anatomical and physiological features. During development, DRG are extruded from the central nervous system and from the blood-brain barrier but remain surrounded by meningeal layers and by cerebrospinal fluid.

DRG house the pain-transmitting small nerve fiber nuclei; each individual nucleus is tightly enveloped by metabolically active glial cells.DRG possess multiple inflammatory/pro-nociceptive molecules including ion channels, neuropeptides, lymphocytes, and macrophages. DRG neurons have pseudo-unipolar structure making them able to generate pain signals; additionally, they can sequester antigen-specific antibodies thus inducing immune-mediated hyperalgesia.

In rodents, diverse physical and/or environmental stressors induce DRG phenotypic changes and hyperalgesia. Unfolding clinical evidence links DRG pathology to fibromyalgia and similar syndromes.

Severe fibromyalgia is associated to particular DRG ion channel genotype. Myalgic encephalomyelitis patients with comorbid fibromyalgia have exercise-induced DRG pro-nociceptive molecules gene overexpression. Skin biopsy demonstrates small nerve fiber pathology in approximately half of fibromyalgia patients.

A confocal microscopy study of fibromyalgia patients disclosed strong correlation between corneal denervation and small fiber neuropathy symptom burden. DRG may be fibromyalgia neural hub where different stressors can be transformed in neuropathic pain. Novel neuroimaging technology and postmortem inquest may better define DRG involvement in fibromyalgia and similar maladies. DRG pro-nociceptive molecules are attractive fibromyalgia therapeutic targets.

I’ve had FM for over thirty years. When I awaken in the morning, I am generally stiff at the base of my back in the vicinity of the DRG. I sometimes also have pain in my shoulders as well. I start the day off with magnesium spray to these areas which helps reduce the pain and stiffness. It is great news that the research world is starting to get funding for these orphan conditions.

sorry, now it works….

is it me or does your link not work? thanks!!!

Diseased monocytes correlating to the symptom severity (Grimson study) is an interesting one to me. I’ve been thinking that I still suffer from PEM, albeit at much lower severity, because a few diseased microglial cells still remain and they get activated at the same old PEM threshold.

Monocytes are essentially peripheral version of microglia, it seems to me. So, maybe they are similarly diseased in MECFS and similarly hypersensitive to low grade inflammation that is otherwise harmless.

Glad you corrected this. MH announced this in a very low key way on Twitter saying this was a $$ renewal. Great research but in a context of continuing abysmally low ME/CFS research funding, the decades ill ME cohort going to the back of the post-viral research queue and NIH fiddling the funding we do have, David Tuller revelation – we are very much waiting for our moment and need advocacy to highlight this.

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