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[[File:ME activists or advocates protesting in 2018.png|alt=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."|thumb|Photo by Richard Lewis.]] Activists and advocates for patients with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME) or [[Chronic fatigue syndrome|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 [[:Category:Citizen scientists|citizen scientists]] who reviewed or re-analysed existing research, and in some cases have conducted their own research. ==Patient advocates and activists== {{See also|List of open letters from patient advocates and advocacy organizations|Open letters from patient advocates and organizations}} Notable patient activists with ME or CFS. *[[Jennifer Brea|Jen Brea]], director of [[Unrest]], co-founder of the [[The MEAction Network|#MEAction Network]] *[[Robin Brown]], retired NHS doctor and founder of [[Doctors with M.E.]], author, and creator of a major UK treatment petition, also involved in training doctors *[[Robert Courtney]] (deceased), citizen scientist and who proved that the [[Cochrane]] review of exercise for CFS failed to meet Cochrane's own standards *[[Keith Geraghty]], psychologist, 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 from [[Ireland]] and extremely well known ME advocate *[[Alem Matthees]], citizen scientist from Australia who fought and won a tribunal for the release of the [[PACE trial]] data despite being too ill to attend. He is now very severely ill. *[[Courtney Miller]], member of the Board of Directors and an online writer at [[Simmaron Research]] *[[Nina Muirhead]], NHS surgeon who has done a number of media interviews and is involved in training doctors and [[Doctors with M.E.]] *[[Graham McPhee]] (deceased), former teacher who campaigned against [[graded exercise therapy]] and for the UK's [[NICE guidelines]] to be reviewed, but died shortly before the new guidelines were published *[[John Peters]], [[PACE trial]] critic from [[Wales]] and originator of a number of [[Freedom of Information Act]] requests, friend of [[Ben Lake]] MP *[[Ryan Prior]], journalist, co-director of the documentary [[Forgotten Plague]], founder of [[The Blue Ribbon Foundation]] and associate producer at CNN<ref>{{Cite web|url=https://www.linkedin.com/in/ryantprior | title = Ryan Prior - Journalist at CNN/Co-Director of "Forgotten Plague" | last = Prior | first = Ryan | authorlink=Ryan Prior | date = |website=LinkedIn|archive-url=|archive-date=|url-status=|access-date=}}</ref> *[[Julie Rehmeyer]], US math/science journalist, [[:Category:PACE trial critics|PACE trial critic]] and author of memoir about living with ME/CFS *[[Rivka Solomon]], writer and organizer in the U.S.; she was a lead organizer in some of the largest in-person events ever held for ME *[[Frank Twisk|Frank N. M. Twisk]], [[Stichting ME-de-patiënten|ME-de-patiënten Foundation]], an outspoken Dutch activist with over a dozen letters or citizen science articles published, Twisk advocates for ME but not [[chronic fatigue syndrome]] *[[Mark Vink]], former doctor (general practice) with [[severe and very severe ME|severe ME]], 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 == *[[Keith Geraghty]], psychologist with [[Myalgic encephalomyelitis|ME]] *[[Brian Hughes]], psychologist *[[Ellen Goudsmit]], psychologist with [[Myalgic encephalomyelitis|ME]] and author of the [[London criteria]] for ME *[[Janet Dafoe]], child psychologist, Vice President of [[Phoenix Rising]], protests at [[Millions Missing protests|Millions Missing]] everyday and full time carer for her very severely ill son [[Whitney Dafoe]] ==ME/CFS researchers == {{See also|List of open letters from researchers|Open letters from researchers||||}} *[[Jonathan Edwards]], well known advocate and infectious diseases physician (retired), applied to join the UK's NICE guideline development group for [[ME/CFS]] *[[Ronald Davis|Ron Davis]], founder of the [[Open Medicine Foundation]], whose son Whitney Dafoe has very severe ME *[[Keith Geraghty]], who has [[Myalgic encephalomyelitis|ME]], and has investigated if patient groups are militant *[[Ellen Goudsmit]], who has [[myalgic encephalomyelitis|ME]], and co-authored the [[London criteria]] and criticized the [[psychologization]] of ME *[[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 ==Journalists == *[[David Tuller]], the "PACE man", senior fellow in Public Health in Journalism and contributor to the [[Virology blog]] *[[Ryan Prior]], associate producer at CNN, who also has ME ==Politicians == *[[Countess of Mar]], member of the UK House of Lords, who has recovered from [[ME/CFS]] *[[Carol Monaghan]], [[:Category:United Kingdom politicians|British MP]] who has arranged several ME debates in UK parliament *[[Ben Lake]], [[:Category:United Kingdom politicians|British MP]] *[[Jamie Raskin]], US Congressman from Maryland, introduced legislation to expand NIH budget for post-viral chronic neuroimmune diseases such as ME ==Charity and patient group representatives== {{See also|List of open letters from patient advocates and advocacy organizations|Open letters from patient groups and patient advocates||||}} *[[Jane Colby]] of [[Tymes Trust|The Young ME Sufferers Trust]] (Tymes Trust) *[[Frank Twisk]] *[[Charles Shepherd]], Medical Advisor at [[The ME Association]], who also has ME *[[Nigel Speight]], pediatrician and charity Medical Advisor *[[Greg Crowhurst]] of [[Stonebird]], nurse, author, carer for his very severely ill wife Linda, and secretary of the [[25 Percent ME Group|25% ME Group]] for the most severely ill == Friends and family of patients == * [[Ronald Davis|Ron Davis]], researcher, father of [[Whitney Dafoe]], who has [[very severe ME]] * [[Janet Dafoe]], psychiatrist, Vice President of [[Phoenix Rising]], protests at [[Millions Missing protests|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 [[NICE guidelines|NHS guidelines]] can be found on his [http://www.Stonebird.co.uk Stonebird] blog * [[Steve Topple]], journalist and carer for his girlfriend == Notable activist campaigns == [[File:ME-activists-advocates-protest.jpg|alt=Too ill to be here banner with footprint sized pieces of paper with handwritten messages from those too ill to go.|thumb|Too ill to be here: Missing Millions activists too ill to attend send in footprint-shaped messages. Photo: Richard Lewis]] * [[Millions Missing protests|#millionsmissing]] protests - international events run by [[The MEAction Network|The #MEAction Network]] * [[BedFest|#Bedfest]] - ME awareness for [[Severe and very severe ME|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== *2008, [https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936 Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study]<ref>{{Cite journal|last = Gilje | first = Ann Marit | authorlink = Ann Marit Gilje | last2 = Söderlund | first2 = Atle | authorlink2 = Atle Söderlund | last3 = Malterud | first3 = Kirsti | authorlink3 = Kirsti Malterud | authorlink4 = | authorlink5 = | date = Oct 2008 | title = Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study|url=https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936|journal=[[Patient Education and Counseling]]|language=en|volume=73|issue=1 | pages = 36–41|doi=10.1016/j.pec.2008.04.001|quote=|via=}}</ref> *2015, [http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis]<ref name="Disdain">{{Cite web|url=http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf | title=THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis|last = Dimmock|first = Mary | authorlink = Mary Dimmock | last2 = Lazell-Fairman | first2 = Matthew | authorlink2 = Matthew Lazell-Fairman | date = Dec 2015 | website = |archive-url=|archive-date=|url-status=|access-date=Nov 5, 2018}}</ref> - Professor Malcolm Hooper *2016, [http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf Illness Management Report: No decisions about ME without me] - results from the ME Association survey on treatment effectiveness, harms and difficulties experienced by patients *2016, [https://www.research.manchester.ac.uk/portal/en/publications/cognitive-behavioural-therapy-in-the-treatment-of-chronic-fatigue-syndrome-a-narrative-review-on-efficacy-and-informed-consent(987590d0-a62d-473e-8d46-b74b9247e81c).html "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent"]<ref name="BleaseGeraghty2016a">{{Cite journal | last = Blease | first1 = Charlotte | authorlink1 = Charlotte Blease | last2 = Geraghty | first2 = Keith | authorlink2 = Keith Geraghty | title = Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent | journal = Journal of Health Psychology | date = Sep 15, 2016 | doi = 10.1177/1359105316667798 | url = https://doi.org/10.1177/1359105316667798 }}</ref> *2016, [http://bjgp.org/content/66/649/437 "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?"]<ref name="Geraghty,Esmail, 2016">{{Cite journal | last = Geraghty | first1 = Keith | authorlink1 = Keith Geraghty | last2 = Esmail | first2 = Aneez | authorlink2 = Aneez Esmail | title = Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm? | journal = British Journal of General Practice | volume = 66 | issue =649 | page = 437-438 | date = 1 Aug 2016 | doi = 10.3399/bjgp16X686473 | url = https://doi.org/10.3399/bjgp16X686473 }}</ref> *2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences]<ref name="Mihelicova">{{Cite journal|last = Mihelicova | first = Martina | authorlink = Martina Mihelicova | last2 = Siegel | first2 = Zachary | authorlink2 = Zachary Siegel | last3 = Evans | first3 = Meredyth | authorlink3 = Meredyth Evans | last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown | last5 = Jason | first5 = Leonard | authorlink5 = Leonard Jason | date = Dec 2016 | title = Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/|journal=Journal of health psychology|volume=21|issue=12|pages=2824–2837|doi=10.1177/1359105315587137|issn=1359-1053|pmc=4675701|pmid=26063209|quote=|via=}}</ref> *2017, [https://jme.bmj.com/content/43/8/549 Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome]<ref name="Blease2017">{{Cite journal|last = Blease | first = Charlotte | authorlink = Charlotte Blease | last2 = Carel | first2 = Havi | authorlink2 = Havi Carel | last3 = Geraghty | first3 = Keith | authorlink3 = Keith Geraghty | authorlink4 = | authorlink5 = | date = 2017-08-01 | title = Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome|url=https://jme.bmj.com/content/43/8/549|journal=Journal of Medical Ethics|language=en|volume=43|issue=8 | pages = 549–557|doi=10.1136/medethics-2016-103691|issn=0306-6800|pmid=27920164|quote=|via=}}</ref> *2018, [https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149 Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter]<ref name="Geraghtyharm">{{Cite journal|last = Geraghty|first = Keith J. | authorlink = Keith Geraghty | last2 = Blease | first2 = Charlotte | authorlink2 = Charlotte Blease | date = 2018-06-21 | title = Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter |url =https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149|journal=Disability and Rehabilitation|language=en|volume=41|issue=25 | pages = 3092-3102|doi=10.1080/09638288.2018.1481149|issn=0963-8288|quote=|via=}}</ref> *2019, [https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12559 Ethical classification of ME/CFS in the United Kingdom]<ref>{{Cite journal|last = O'Leary|first = Diane | authorlink = Diane O'Leary | date = Feb 2019 | title = Ethical classification of ME/CFS in the United Kingdom|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12559|journal=Bioethics|language=en|volume=|issue=|pages=|doi=10.1111/bioe.12559|issn=1467-8519|quote=|via=}}</ref> *2019, [https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programme]<ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf | title =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 |last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref> - survey commissioned by NICE in the UK for the clinical guidelines review *2019, [http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/ Faces of fatigue: Ethical considerations]<ref>{{Cite web|url=http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/ | title = Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome {{!}} Bioethics.net | website = bioethics.net|access-date=2019-02-10}}</ref> *2019, [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] by the Grace Charity for M.E., with the 25% ME Group *2019, [https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1718292 Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade]<ref name="Friedberg2019">{{Cite journal | title = Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade|url=https://doi.org/10.1080/21641846.2020.1718292|journal=Fatigue: Biomedicine, Health & Behavior | date = 2020-01-02|issn=2164-1846|pages=24–31|volume=8|issue=1|doi=10.1080/21641846.2020.1718292|first = Fred | last = Friedberg | last2 = | first2 = |pmc=|pmid=|quote= | author-link = Fred Friedberg | authorlink2 = |access-date=|via=}}</ref> ==See also== *[[Intimidation and bullying of PACE trial critics]] *[[Medical neglect and abuse]] *[[Ethical issues]] *[[Individual quotes]] about ME *[[:Category:Advocates or allies |Advocates or allies]] (category) *[[:Category:PACE trial critics |PACE Trial critics]] *[[:Category:Psychological paradigm critics |Psychological paradigm critics]] *[[Primer for journalists]] *[[:Category:People with ME, CFS, and/or FMS|People with ME, CFS, and/or FMS]] *[[Biopsychosocial model]] *[[Wessely school]] ==References== {{reflist}} [[Category:Advocates or allies]] [[Category:People]]
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