ME activists and advocates

Activists and advocates for patients with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome.

Patient activists
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

 * 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

 * 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

 * David Tuller, the "PACE man", senior fellow in Public Health in Journalism and contributor to the Virology blog

Politicians

 * 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

 * 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

 * 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

 * #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
 * 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