ME activists and advocates

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Photo by Richard Lewis.

Activists and advocates for patients with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome include patients, their friends and family, researchers and health professionals, politicans, and members of the general public.

A number of activists are citizen scientists who reviewed or re-analysed existing research, and in some cases have conducted their own research.

Patient activists[edit | edit source]

Notable patient activists with ME or CFS.

Psychologists and psychiatrists[edit | edit source]

ME/CFS researchers[edit | edit source]

Other scientists[edit | edit source]

Politicians[edit | edit source]

Charity and patient group representatives[edit | edit source]

Friends and family of patients[edit | edit source]

Notable activist campaigns[edit | edit source]

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Too ill to be here: Missing Millions activists too ill to attend send in footprint-shaped messages. Photo: Richard Lewis

Notable studies[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. Gilje, Ann Marit; Söderlund, Atle; Malterud, Kirsti (Oct 2008). "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study". Patient Education and Counseling. 73 (1): 36–41. doi:10.1016/j.pec.2008.04.001. 
  2. Dimmock, Mary; Lazell-Fairman, Matthew (Dec 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved Nov 5, 2018. 
  3. Blease, Charlotte; Geraghty, Keith (Sep 15, 2016). "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent" (Journal of Health Psychology). doi:10.1177/1359105316667798. 
  4. Geraghty, Keith; Esmail, Aneez (Aug 1, 2016). "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?". British Journal of General Practice. 66 (649): 437-438. doi:10.3399/bjgp16X686473. 
  5. Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (Dec 2016). "Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences". Journal of health psychology. 21 (12): 2824–2837. doi:10.1177/1359105315587137. ISSN 1359-1053. PMC 4675701Freely accessible. PMID 26063209. 
  6. Blease, Charlotte; Carel, Havi; Geraghty, Keith (Aug 1, 2017). "Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome". Journal of Medical Ethics. 43 (8): 549–557. doi:10.1136/medethics-2016-103691. ISSN 0306-6800. PMID 27920164. 
  7. Geraghty, Keith J.; Blease, Charlotte (Jun 21, 2018). "Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter". Disability and Rehabilitation: 1–10. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288. 
  8. O'Leary, Diane (Feb 2019). "Ethical classification of ME/CFS in the United Kingdom". Bioethics. doi:10.1111/bioe.12559. ISSN 1467-8519. 
  9. Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (Feb 27, 2019). "Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT" (PDF). Oxford Brookes University. 
  10. "Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome | Bioethics.net". www.bioethics.net. Retrieved Feb 10, 2019. 
  11. Friedberg, Fred (Jan 2, 2020). "Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade". Fatigue: Biomedicine, Health & Behavior. 8 (1): 24–31. doi:10.1080/21641846.2020.1718292. ISSN 2164-1846. 

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

PACE trial - A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

NICE guidelines - Clinical guidelines used in the UK.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.