ME activists and advocates

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Photo of two women wearing Missing Millions T-shirts at a protest. One is a young woman sat on the concrete. The other woman is smiling and holding a sign saying "There's around 50,000 people housebound in the UK with ME and missing from the outside world."
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 advocates and activists[edit | edit source]

Notable patient activists with ME or CFS.

Psychologists and psychiatrists[edit | edit source]

ME/CFS researchers[edit | edit source]

Journalists[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]

Too ill to be here banner with footprint sized pieces of paper with handwritten messages from those too ill to go.
Too ill to be here: Missing Millions activists too ill to attend send in footprint-shaped messages. Photo: Richard Lewis
  • #millionsmissing protests - international events run by The #MEAction Network
  • #Bedfest - ME awareness for bedbound and housebound patients
  • NICE guidelines review - a successful UK petition by the ME Association calling for the CFS/ME guidelines to be reviewed, in protest at the announcement that the guidelines would be moved to the "static" list and not reviewed for another 10 years, the vast majority of stakeholders also supported the review
  • Let's Do It for ME - Ongoing patient-run campaign to fund a biomedical research center in Norwich, UK, in support of the Invest in ME Research charity
  • The Stop GET campaign ran for a number of years to campaign to remove the harmful graded exercise therapy as an approved treatment for ME/CFS, largely aimed at the CDC

Notable studies[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. Prior, Ryan. "Ryan Prior - Journalist at CNN/Co-Director of "Forgotten Plague"". LinkedIn.
  2. Gilje, Ann Marit; Söderlund, Atle; Malterud, Kirsti (October 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.
  3. Dimmock, Mary; Lazell-Fairman, Matthew (December 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved November 5, 2018.
  4. Blease, Charlotte; Geraghty, Keith (September 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.
  5. Geraghty, Keith; Esmail, Aneez (August 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.
  6. Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (December 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 4675701. PMID 26063209.
  7. Blease, Charlotte; Carel, Havi; Geraghty, Keith (August 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.
  8. Geraghty, Keith J.; Blease, Charlotte (June 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. 41 (25): 3092–3102. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288. Unknown parameter |authorlinklink= ignored (help)
  9. O'Leary, Diane (February 2019). "Ethical classification of ME/CFS in the United Kingdom". Bioethics. doi:10.1111/bioe.12559. ISSN 1467-8519.
  10. Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 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.
  11. "Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome | Bioethics.net". bioethics.net. Retrieved February 10, 2019.
  12. Friedberg, Fred (January 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.

NICE guidelines Clinical guidelines used in the UK.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (M.E.) - 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.

myalgic encephalomyelitis (M.E.) - 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.