ME activists and advocates
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Activists and advocates for patients with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome.
Patient activists[edit | edit source]
Notable patient activists with ME or CFS.
- Jen Brea, director of Unrest, co-founder of the #MEAction Network
- Robin Brown, NHS doctor, author, and creator of a major UK treatment petition
- Robert Courtney (deceased), citizen scientist and critic of the Cochrane review
- Keith Geraghty, researcher and activist who has investigated if ME charities are militant
- Ellen Goudsmit, psychologist and former patron of several ME charities
- Tanya Harrison, BRAME charity founder, resigned from the 2007 NICE guidelines group because she could not support the controversial guidelines they developed
- Cort Johnson, founder of both Phoenix Rising and Health Rising, has won several awards for advocacy, blogs about science and research
- Tom Kindlon, citizen scientist and extremely well known ME advocate
- Alem Matthees, citizen scientist who fought and won a tribunal for the release of the PACE trial data, now very severely ill
- Courtney Miller, member of the Board of Directors and an online writer at Simmaron Research
- John Peters, PACE trial critic and originator of a number of Freedom of Information Act requests, friend of Ben Lake MP
- Julie Rehmeyer, math/science journalist, PACE trial critic and author of memoir about living with ME/CFS
- Frank N. M. Twisk, ME-de-patiënten Foundation, an outspoken Dutch activist with over a dozen letters or citizen science articles published, Twisk advocates only for ME and does not see it as the same as CFS
- Mark Vink, doctor (general practice), patient researcher, former marathon runner and Dutch national hockey captain
- Naomi Whittingham, severely ill since childhood, Naomi featured in Voices from the Shadows and has a number of media interviews
Psychologists and psychiatrists[edit | edit source]
- Brian Hughes, psychologist
- Ellen Goudsmit, psychologist and author of the London criteria for ME, who also has ME
- Janet Dafoe, psychiatrist, Vice President of Phoenix Rising, protests at Millions Missing everyday and full time carer for her very severely ill son Whitney Dafoe
ME/CFS researchers[edit | edit source]
- Jonathan Edwards, well known advocate and infectious diseases specialist, applied to join the UK's NICE guideline development group for ME/CFS
- Ron Davis, whose son Whitney Dafoe has very severe ME
- Keith Geraghty, who has ME, and has investigated if patient groups are militant
- Ellen Goudsmit, who has ME, and co-authored the London criteria
- Leonard Jason, who has also recovered from ME/CFS
- Sarah Myhill, GP, author and researcher, now in private practice treating ME/CFS in Wales, UK
Other scientists[edit | edit source]
- David Tuller, the "PACE man", senior fellow in Public Health in Journalism and contributor to the Virology blog
Politicians[edit | edit source]
- Countess of Mar, member of the UK House of Lords, who has recovered from ME/CFS
- Carol Monaghan, British MP who has arranged several ME debates in UK parliament
- Ben Lake, British MP
Charity and patient group representatives[edit | edit source]
- Jane Colby, The Young ME Sufferers Trust
- Frank Twisk
- Charles Shepherd, Medical Advisor at The ME Association
- Nigel Speight, doctor and charity Medical Advisor
Friends and family of patients[edit | edit source]
- Ron Davis, researcher, father of Whitney Dafoe, who has very severe ME
- Janet Dafoe, psychiatrist, Vice President of Phoenix Rising, protests at Millions Missing everyday and full time carer for her very severely ill son Whitney Dafoe
- Greg Crowhurst, nurse, outspoken activist and full-time carer for his very severely ill wife, some of Greg's views and criticism of NHS guidelines can be found on his Stonebird blog
- Steve Topple, journalist and carer for his girlfriend
Notable activist campaigns[edit | edit source]
- #millionsmissing protests - international events run by The #MEAction Network
- 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
- 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
Notable studies[edit | edit source]
See also[edit | edit source]
- Intimidation and bullying of PACE trial critics
- Advocates or allies
- PACE Trial critics
- Psychological paradigm critics
- Primer for journalists
- People with ME, CFS, and/or FMS
- Biopsychosocial model
- Wessely school
- People with ME, CFS, and/or FMS