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[[File:ME-CFS-quotes.jpg|alt=Myalgic encephalomyelitis and chronic fatigue syndrome quotes from me-pedia.org|thumb]] <ref>{{Cite web|url=https://www.meaction.net/2016/10/10/attend-the-iacfsme-conference/|title=Attend the IACFS/ME conference this month|last=S|first=Jaime|date=2016-10-10|website=#MEAction Network|language=en-US|access-date=2023-05-06}}</ref>Notable quotes about [[Myalgic Encephalomyelitis]] and [[Chronic Fatigue Syndrome]] from researchers, doctors, advocates, patients, jouranlists, and celebrities. == Researchers, scientists, doctors and professors == === Good === *"Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in."<ref name="Muirhead2019">{{Citation | last = Muirhead | first = Nina | authorlink = Nina Muirhead | url =https://www.rcplondon.ac.uk/news/do-you-really-believe-me | title = Do you really believe in ME?|website=Royal College of Physicians | date = 2019}}</ref> ~ Dr [[Nina Muirhead]] *"The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."<ref name="Muirhead2019" /> ~ Dr [[Nina Muirhead]] *“I’m shocked that [[The Lancet]] published it…The [[PACE trial|PACE]] study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.” He added, “Maybe The Lancet picked reviewers who agreed with the authors and raved about the paper, and the journal went along without digging into the details.”<ref>[http://www.meaction.net/2015/10/24/investigate-journalist-exposes-pace-trial/ #MEAction - Investigative Journalist Exposes PACE Trial - Ronald Davis]</ref> ~ Dr. [[Ronald Davis]] *"I have a wish and a dream that medical & research societies in US apologise to [[ME/CFS]] patients"<ref>[https://voat.co/v/CFS/comments/584997 Dr. Montoya of the ME/CFS Initiative, Stanford: "I have a wish and a dream that medical & research societies in US apologise to MECFS patients" - CMRC 2015 Dr. Montoya - 2015]</ref> ~ Dr. [[Jose Montoya]] *“PACE really attracts my attention because it’s so goddamned bad. It’s bad in its conduct, it’s bad in its reporting, and it’s fascinating that it’s going unchallenged. And it’s uncritically being passed on by journalists and the media with clear harm to patients.”<ref>[http://phoenixrising.me/archives/27787 James Coyne “lays waste” to PACE trial in Edinburgh - Phoenix Rising]</ref> ~ Professor [[James Coyne]] *"Less than half the doctors in this country know the name of this illness. I don't know another illness like that.'<ref>[https://www.youtube.com/watch?v=4J5CRGPvgl4 Canary in a Coal Mine You Tube 00:05]</ref> ~ Dr. [[Nancy Klimas]] *"Input from the patients is absolutely critical for any disease that you want to study."<ref>[http://www.meaction.net/2016/02/16/transcripts-and-slides-from-dr-naths-talk-on-nih-study/ Transcripts and Slides from Dr Nath’s talk on NIH study - #MEAction - CDC Grand Rounds Dr. Avindra Nath - 2/16/16]</ref> ~ Dr. [[Avindra Nath]] *"This illness is wicked."<ref>[https://www.youtube.com/watch?v=Qxb356oX6cI This illness is wicked - ME - Youtube 1:19 - Nancy Klimas]</ref> ~ Dr. [[Nancy Klimas]] *"The germ is nothing; the terrain is everything."<ref>[https://twitter.com/MBVanElzakker/status/453540676635201536 "The germ is nothing; the terrain is everything."]</ref> ~ [[Michael VanElzakker]] quoting Louis Pasteur in reference to the [[Vagus nerve infection hypothesis]] *"Fatigue is not a disease, and it's not even a symptom. Fatigue is an alarm system." @6:02<ref>[https://www.youtube.com/watch?v=wJB95m4FLa0 "Fatigue is not a disease, and its not even a symptom. Fatigue is an alarm system." @6:02]</ref> ~ Dr. [[Jarred Younger]] *"There is nothing that you hold dear that this illness cannot take from you. Nothing."<ref>[http://www.njmecfsa.org/2010/02/13/skeptical-of-skeptics/ "There is nothing that you hold dear that this illness cannot take from you. Nothing."]</ref> ~ Thomas L. English, MD *"Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."<ref>[http://niceguidelines.blogspot.co.uk/2015/01/exercise-physiologist-prof-kellerit-is.html "Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness."]</ref> ~ [[Betsy Keller]], PhD (2015) *"Because the complaints of patients were so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble."<ref>{{Cite web | date = Fall 2005 |archive-url = http://web.archive.org/web/20151022083413/http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html|archive-date=2015-10-22|url-status=dead|quote=Because the complaints of patients were so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble. | first = Erich | last = Ryll | authorlink = Erich Ryll | title = Infectious Venulitis | url = http://www.oocities.org/sezar99q/MECFSInfectiousVenulitis.html}}</ref> ~ Dr. [[Erich Ryll]] *"Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it." <ref>[http://wames.org.uk/cms-english/2016/05/chu-says-suicide-in-mecfs-not-always-linked-to-depression-and-anxiety/ "Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it."]</ref> ~ Dr. [[Lily Chu]] *“(CFS patients) feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. [[Mark Loveless]], Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University<ref>[http://www.whitneydafoe.com/news/ “(CFS patients) feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”]</ref> *"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. [[Nancy Klimas]], AIDS and CFS researcher and clinician, University of Miami<ref>[http://www.whitneydafoe.com/news/ “My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses (AIDS and CFS), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.”]</ref> *"Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."<ref>[https://twitter.com/postersandme/status/766265142795526144/photo/1 "Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."]</ref> ~ [[Michael VanElzakker]] on the [[PACE trial]] *"What #PACEtrial called "[[Cognitive behavioral therapy|CBT]]" is not normal CBT. Cancer patients see CBT therapists all the time and are not told, 'you're not really sick.'"<ref>[https://twitter.com/MBVanElzakker/status/765678606425198592 "What #PACEtrial called "CBT" is not normal CBT. Cancer patients see CBT therapists all the time and are not told, 'you're not really sick.'"]</ref> ~ [[Michael VanElzakker]] *"This is not an argument with psychiatry. Mental and physical illness are equally real and horrible. As with any long-term illness, some people with ME/CFS will develop comorbid depression and other mental health problems where [[CBT]] can be of help alongside good quality general management. The argument here is with a flawed model of causation assuming efficacy for [[CBT]] and [[GET]] while taking no significant account of varying clinical presentations and disease pathways." ~ Dr [[Charles Shepherd]]<ref name="Shepherd2017">{{cite journal | last = Shepherd | first = Charles B | author-link = Charles Shepherd | date = 2017 | title=PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the methodology and results.|journal=Journal of Health Psychology|doi=10.1177/1359105317703786}}</ref> *"[T]he time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years.<br />Doctors need to start listening to their patients and there must now be increased investment in biomedical research to gain a better understanding of the disease process and to develop treatments that these patients desperately need."<ref name="Tele2015" /> - Dr [[Charles Shepherd]] *"I have a wish and a dream that medical and scientific societies will apologise to their ME patients"<ref name="Tele2015">{{Cite web|url =https://meassociation.org.uk/2015/12/its-time-for-doctors-to-apologise-to-their-me-patients-dr-charles-shepherd-in-the-daily-telegraph-7-december-2015/ | date = Dec 7, 2015 | last = Shepherd | first = Charles | authorlink = Charles Shepherd | title = It's time for doctors to apologise to their ME patients|publisher=The Telegraph|access-date=Oct 31, 2020 | website = |archive-url=|archive-date=|url-status=}}</ref><ref>{{Cite web|url =https://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html | date = Dec 7, 2015 | last = Shepherd | first = Charles | authorlink = Charles Shepherd | title = It's time for doctors to apologise to their ME patients|publisher=The Telegraph}}</ref> ~ Dr [[Jose Montoya]], 2015 *“ME is in the blood, not between the ears.”<ref>{{Cite web|url=https://www.meaction.net/2016/10/10/attend-the-iacfsme-conference/|title=Attend the IACFS/ME conference this month|last=S|first=Jaime|date=2016-10-10|website=#MEAction Network|language=en-US|access-date=2023-05-06}}</ref> Dr. Olav Mella (Norway) Day 2 of the IACFS/ME 12th BIENNIAL CONFERENCE === Bad === *"I have previously made it clear that I think that [[PACE trial|PACE]] was a good trial; I once described it as a thing of beauty."<ref>[http://andrewgelman.com/2016/01/13/pro-pace/ Pro-PACE, anti-PACE - Statistical Modeling, Causal Inference, and Social Science]</ref> ~ Professor [[Simon Wessely]] *"The [[PACE trial]] paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying [[CFS/ME]]"<ref>{{Cite web | url = http://www.forward-me.org.uk/Reports/White%20to%20Lancet%20re%20Hooper%20complaint%20(2).pdf | title=Response to the complaint to The Lancet of March 2011 | last = White | first = PeterD. | authorlink = Peter White | last2 = KA | first2 = Goldsmith | authorlink2 = Kimberley Goldsmith | date = 2011 | website = [[Forward-ME]]|archive-url=|archive-date=|url-status=|access-date=|quote=The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME | last3 = Johnson | first3 = AL|others= | authorlink3 = Anthony Johnson | last4 = Walwyn | first4 = R | authorlink4 = Rebecca Walwyn | last5 = Baber | first5 = HL | authorlink5 = Hannah Baber | last6 = Chalder | first6 = T | authorlink6 = Trudie Chalder | last7 = Sharpe | first7 = M | authorlink7 = Michael Sharpe | last8 = on behalf of all the co-authors}}</ref>- PeterD. White et al, on behalf of the PACE trial authors. *"And so when you find people with thing like [[fibromyalgia]], you’re either going to be sick, bad, or weak – and the idea is really to find a fourth way – to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human."<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ #MEAction Transcript - Video Interview with Dr. Brian Walitt]</ref> ~ Dr. [[Brian Walitt]] *"If [ME/CFS] is all in your head, it's only because your head is part of your body."<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study Patients' advocates share concerns about trial protocol, bias MedPage Today - The Gupta Guide - Shannon Firth]</ref> ~ Dr. [[Brian Walitt]] === Ugly === * "...many of the activists trying to have scientific papers they don’t like retracted are not patients. Patients would surely be too ill to produce so many complaints and FOI requests to journals, funders and universities." ~ Prof. [[Michael Sharpe]]<ref>{{Cite web | url = http://www.virology.ws/2018/11/08/trial-by-error-an-australian-exchange-with-professor-sharpe/ | title = Trial By Error: An Australian Exchange with Professor Sharpe|website=[[Virology blog]]|language=en-US|access-date=2018-11-28}}</ref> *"With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir [[Simon Wessely]]<ref name="dangersofresearch">{{Cite journal | last = Hawkes | first = Nigel | authorlink = | date = Jun 22, 2011 | title = The dangers of research into CFS/ME | url = https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf | journal=[[BMJ]]|volume=342|issue=d3780|pages=1392-1384|quote=|via=|doi=10.1136/bmj.d3780}}</ref> *"... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better..."<ref>{{Cite journal | last = Peters | first = Sarah | authorlink = Sarah Peters | last2 = Wearden | first2 = Alison | authorlink2 = Alison Wearden | last3 = Morriss | first3 = Richard | authorlink3 = Richard Morriss | last4 = Dowrick | first4 = Christopher F | authorlink4 = Christopher Dowrick | last5 = Lovell | first5 = Karina | authorlink5 = Karina Lovell | last6 = Brooks | first6 = Joanna | authorlink6 = Joanna Brooks | last7 = Cahill | first7 = Greg | authorlink7 = Greg Cahill | last8 = Chew-Graham | first8 = Carolyn | authorlink8 = Carolyn Chew-Graham | date = Dec 2011 | title = Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis | url = http://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132|journal=Implementation Science|language=en|volume=6|issue=1|pages=|doi=10.1186/1748-5908-6-132|issn=1748-5908|pmc=3259041|pmid=22192566|quote=|via=}}</ref> ~ Nurse supervisor, [[FINE trial]] == Journalists and media == === Good === *"I stopped somewhere just beyond 14,000 words — I mean, enough was enough. But, amazingly, I still hadn’t covered everything that had gone wrong in the PACE trial."<ref>[http://alumni.berkeley.edu/california-magazine/just-in/2015-11-30/reporter-excoriates-chronic-fatigue-syndrome-study-i-stopped Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough - California Magazine] - [[David Tuller]] 11/18/2015</ref> ~ [[David Tuller]] *2013, "I am a reporter and my beat is hell ... It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice…" ~ [[Llewellyn King]]<ref>http://voicesfromtheshadowsfilm.co.uk/2013/llewellyn-king-article-chronic-fatigue-syndrome-hidden-in-plain-sight/</ref> === Bad === *"There’s no easy fix for [[fibromyalgia]], a problem that seems to lurk in the gap between mind and body." ~ ''Family Practice News'' (On Dr. [[Brian Walitt]])<ref>[http://www.familypracticenews.com/specialty-focus/rheumatology/single-article-page/video-fibromyalgia-doesnt-fit-the-disease-model/e913134880916685f3005dac5459ab88.html Family Practice News on Dr. Brian Walitt 9/30/15]</ref> === Ugly === *“It was written up in Rolling Stone magazine and labeled the '[[Yuppie Flu]].'”<ref>[http://www.managedcaremag.com/archives/2010/10/chronic-fatigue-syndrome-poses-management-challenge Managed Care - William Atkinson - October 2010]</ref> ~ William Atkinson == Celebrity patients == [[File:ME-CFS-quoteAliceHattrick.png|alt=It's still an impossible diagnosis—too serious to be fake, too subjective to be real. Alice Hattrick on ME/CFS.|thumb]] *“Fatigue is what we experience, but it is what a match is to an atomic bomb.”<ref name="Hillenbrand">{{Cite web | url = https://scopeblog.stanford.edu/2014/10/22/unbroken-a-chronic-fatigue-patients-long-road-to-recovery/ | title = Unbroken: A chronic fatigue syndrome patient’s long road to recovery | last = Newby | first = Kris | authorlink = | date = 2014-10-22 | website = Scope {{!}} Stanford University|language=en-US|archive-url=|archive-date=|url-status=|quote= Fatigue is what we experience, but it is what a match is to an atomic bomb.|access-date=2020-06-20}}</ref> ~ [[Laura Hillenbrand]] *"It’s still an impossible diagnosis—too serious to be fake, too subjective to be real"<ref name="NS2021">{{Cite web | date = Oct 7, 2021 | url = https://www.newstatesman.com/the-culture-interview/2021/10/society-is-ableist-alice-hattrick-on-gender-chronic-illness-and-long-covid | title = "Society is ableist": Alice Hattrick on gender, chronic illness and long Covid | first = Ellen | last = Peirson-Hagger|publisher=New Stateman {{!}} The Culture Interview|access-date=2022-04-09}}</ref> ~ [[Alice Hattrick]] *"I disappeared entirely and no one knew why. Among the people who hadn't a clue was me."<ref>[https://www.youtube.com/watch?v=IW11Je8pm20 Canary in a Coal Mine Preview - ME (CFS) 2:17]</ref> ~ [[Howard Bloom]] *"best of luck everyone, and keep up the good work "[[Invest in ME]]". it's a long hard struggle, but keep putting the boot in, and i'm sure that one day ME will get the recognition and the remedies that we so desperately desire. can't help thinking that in 50 years people will look back on these days as the ME dark ages. let's get into the light!"<ref>[http://ldifme.org/guestbook/#comment-2353540593 LDIFME - Awareness > Message from Stuart Murdoch - 11/11/2015]</ref> ~ [[Stuart Murdoch]] == Patients and advocates == [[File:ME-CFS-sicknottired.png|thumb|right| alt=We're not tired, we're sick. Julie Rehmeyer, ME/CFS patient]] [[File:GET-CBT-ME-chronicfatiguesyndrome.jpeg|alt=Graded exercise therapy and CBT. "As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise (2)." - Maik Speedy (2015). Annals of Internal Medicine.|thumb|459x459px|As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise<sup>(2)</sup>." ―Dr [[Maik Speedy]] (Dec 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 163(11): 884.]]<br style="clear:both"> *"We're sick, not tired" ~ [[Julie Rehmeyer]], science writer with ME/CFS<ref name="AmScientist2017">{{Citation | url =https://www.americanscientist.org/article/an-illness-observed-a-conversation-with-julie-rehmeyer | title = An illness observed: a conversation with Julie Rehmeyer | first = Dianne | last = Timblin | date = May-June 2017|work=American Scientist|volume=105| issue=3}}</ref> *"None of you are sick with ME/CFS because of how you live or think."<ref>{{Cite web|url = https://www.facebook.com/112338563637178/posts/176313930572974 | title = A poem I wanted to share |website=Facebook | first = Whitney | last = Dafoe | authorlink = Whitney Dafoe | date = Jul 2, 2020}}</ref> ~ [[Whitney Dafoe]] *"DYING"<ref>[https://www.facebook.com/cfsresearchcenter/photos/a.847535005318290.1073741828.630143697057423/973567226048400/?type=3&theater Chronic Fatigue Syndrome Research Center at Stanford University - Face Book - Whitney Dafoe - 12/29/2015]</ref> ~ [[Whitney Dafoe]] *“You wake up one day with a bad flu and it never goes away. Ever.”<ref>TheAtlantic.com "Quoted: the best quotes we heard from our sources today," October, 8, 2015 [https://www.theatlantic.com/notes/2015/10/quoted-on-100815/409795/]</ref> ~ Justin Reilly (TheAtlantic.com quote of the day, 10/8/2015) *"To conclude that activity avoidance causes fatigue (rather than fatigue being a direct cause of activity avoidance), is similar to concluding that a person has flu because they’ve taken a day off work, rather than the obvious conclusion that they’ve taken a day off work because they have flu."<ref>[https://pubpeer.com/publications/2A1DECF372E891487C3435A1677042 PubPeer Comment - Robert Courtney - 2/16/16]</ref> ~ [[Robert Courtney]] *A Twitter Rant ~ [https://twitter.com/2lisaland/status/658264477192888321 @2lisaland] - "I think it's such a shame when disabled people feel uncomfortable using aids when healthy ppl buy any gadget that makes life easier for them"<ref>[https://twitter.com/2lisaland/status/658264477192888321 A Twitter Rant @2lisaland]</ref> ~ Lisa England *"Think of Madoff or Enron in charge of a disease." #PACEtrial #CDC30YRS #MEclinics #OutcomeSwitching #CheaperThanResearch #FollowTheMoney<ref>[https://twitter.com/FibroMEcfs/status/699813469491605504 Twitter - @FibroMEcfs]</ref> ~ Fibro '73 ME/CFS '79 *"Eventually I received a diagnosis of 'chronic fatigue syndrome,' a name that feels insulting when your entire life has been stolen from you."<ref>[http://www.thewishdish.com/telling-story-forgotten-plague-chronic-fatigue-syndrome/ Telling the Story of a Forgotten Plague: Chronic Fatigue Syndrome - Wish Dish - Ryan Prior]</ref> ~ [[Ryan Prior]] *"For many ME/CFS patients--especially those on the severe end--fatigue isn't the most significant aspect of the illness at all. Neurological or gut problems are often worse--I know one patient who may end up dying because she can't eat and can't get appropriate medical care for this misunderstood condition. The name chronic fatigue syndrome has created enormous confusion about the nature of the disease, making people think it's a variation on how they feel when they're really worn out. That's simply not the case—we're sick, not tired." ~ [[Julie Rehmeyer]]<ref name="AmScientist2017" /> *"When the check came I couldn't sign my name...My brain was burning."<ref>[https://www.youtube.com/watch?v=IW11Je8pm20 Canary in a Coal Mine Preview - ME (CFS) - You Tube 2:09 - 2:15 Jen Brea]</ref> ~ [[Jennifer Brea]] *“Jay Levy saw ten women," the doctor later recalled, "And he thought they were all hysterical. Then he saw a man, whose complaints he took seriously.”<ref>[https://www.goodreads.com/work/quotes/1139201-osler-s-web-inside-the-labyrinth-of-the-chronic-fatigue-syndrome-epidem Hillary Johnson from Osler's Web]</ref> ~ [[Hillary Johnson]] from [[Osler's Web]] *When he ([[Brian Walitt]]) says that [[fibromyalgia]] is real to patients, he, of course, means it’s not real to him.<ref>[http://thoughtsaboutme.com/2016/02/21/brian-walitts-radical-bias-disorders-of-subjective-perception-mecfs-as-normal-life-experience/#comment-21873 Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience? - J.K. Burmeister 2/21/16]</ref> ~ [[Jeannette Burmeister]] *"For most patients [[Chronic fatigue syndrome|CFS]] isn't a diagnosis, it's an accusation."<ref>[https://twitter.com/fabrahamwriter/status/701156441323917312 For most patients CFS isn't a diagnosis, it's an accusation - ~ @fabrahamwriter]</ref> ~ [https://twitter.com/fabrahamwriter @fabrahamwriter] *"It’s the utter cluelessness about who we are that is disturbing." (About [[NIH Post-Infectious ME/CFS Study]])<ref>[http://www.meaction.net/2016/03/04/meactions-questions-for-nihs-intramural-study-team/ #MEAction’s Questions for NIH’s Intramural Study Team - Comments - Mary Schweitzer]</ref> ~ [[Mary Schweitzer]] *"I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."<ref>[https://twitter.com/mindandthemagic/status/719890035286388736 "I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."]</ref> ~ [https://twitter.com/mindandthemagic/status/719890035286388736 @mindandthemagic] *"Telling someone w/ME you know how they feel bc you get tired is like telling someone w/cancer you know how they feel bc you stubbed your toe"<ref>[https://twitter.com/SKWixey/status/723897594238349313 Telling someone w/ME you know how they feel bc you get tired is like telling someone w/cancer you know how they feel bc you stubbed your toe]</ref> ~ [https://twitter.com/SKWixey @SKWixey] *“Psychiatry has become the place where we shunt illnesses that we don’t yet understand.”<ref>[http://www.meaction.net/2016/07/04/jen-brea-gives-rallying-ted-talk/ Jen Brea @ TedSummit - MEAction]</ref> ~ [[Jennifer Brea]] *"Will @Lancetpsychiatry PACE proved to be #MECFS Stonewall?"<ref>https://twitter.com/coyneoftherealm/status/661318252312694784</ref> ~ Dr. [[James Coyne]] *"Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients."<ref>[https://justpaste.it/10ksr Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients.]</ref> ~ @batteredoldbook *"As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by [[Graded exercise therapy |GET]], I am in a unique position to answer how harmful GET and [[cognitive behavioral therapy]] (CBT) really are. The basis of these therapies is [[illness beliefs |false illness beliefs]], meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise." ~ Dr [[Maik Speedy]], Annals of Internal Medicine (2015)<ref>{{Cite journal | last = Speedy | first = Maik | authorlink = Nice guidelines blog | date = Dec 2015 | title = Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url = http://www.annals.org/data/journals/aim/934718/aime201512010-l155178.pdf | journal=Annals of Internal Medicine|volume=163|issue=11 | pages = 884|quote=As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by [[Graded exercise therapy |GET]], I am in a unique position to answer how harmful GET and [[cognitive behavioral therapy]] (CBT) really are. The basis of these therapies is [[illness belief|false illness beliefs]], meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise.<br >The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, not chronic fatigue, and GET and CBT force you to ignore your symptoms to exercise your way back to full fitness. If you do that, you exceed your limit and cause a relapse, and the more you exceed your limit, the bigger the relapse and the less likely you are to recover from it. Many patients with this condition have become [[severe and very severe ME |homebound and bedridden]] because of a major relapse caused by GET, and we will get our health and independence back only if we receive proper medication.}}</ref> == Advocacy organizations == === Good === * "Advise patients to listen to their bodies and to stop activities before they exceed their tolerance threshold."<ref>{{Cite web | url = http://www.forward-me.org.uk/Reports/NICE-comments-form-2.pdf | title=Consultation on draft scope {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020) | last = Forward-ME | first = | authorlink = Forward-ME | date = Jul 2018 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> ~ [[Forward-ME]] *"CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible."<ref>{{Cite web | url = https://www.meassociation.org.uk/2015/02/name-change-committee-report-comments-by-dr-charles-shepherd-medical-adviser-me-association-11-february-2015/ | last = Shepherd | first = Charles|website=[[ME Association]] | title = Name change committee report {{!}} Comments by Dr Charles Shepherd | date = 2015-04-11}}</ref> ~ Dr [[Charles Shepherd]], Medical Advisor, [[ME Association]] * "CBT/GET have been proven to be based on non-science for ME and should be removed from any recommendations in the guideline."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"CBT/GET must be dropped as recommendations for treatment of ME."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"The ME that we know has no connection to childhood problems or maternal anxiety but an illness that strikes out of the blue in previously healthy persons."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"The PACE Trial is null science, bad science, discredited science, its worth is only to demonstrate how research should not be conducted."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"By having a role on the [PACE trial] Steering Committee and Management Group, there was a de facto endorsement of the use of £5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research. :I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm."<ref>{{Cite web | url = https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/ | title = The PACE trial and behavioural treatments for M.E. | last = Chowdhury | first = Sonya | authorlink=Sonya Chowdhury | date = Aug 29, 2017 | website = Action for ME|archive-url=https://web.archive.org/web/20180829192602/https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|archive-date=2018-08-29|url-status=dead|access-date=2019-02-09}}</ref> ~ Sonya Chowdhury, Chief Executive, [[Action for ME]] (statement later deleted) *"Public money is being wasted on research that will be of little benefit and may actually be harmful to ME patients. It is about time serious money was spent on the pathology of this devastating illness."<ref>{{Cite web | url = https://www.meassociation.org.uk/2007/06/mea-support-statement-on-wasteful-research/ | title = MEA support statement on wasteful research | last = ME Association | first = | authorlink = ME Association | date = Jun 2007 | website = [[ME Association]]|language=en-US|others=|archive-url=|archive-date=|url-status=|access-date=2019-03-04|quote="Public money is being wasted on research that will be of little benefit and may actually be harmful to ME patients. It is about time serious money was spent on the pathology of this devastating illness." - [[Simon Lawrence]], [[25 Percent ME Group]]}}</ref> ~ [[Simon Lawrence]], [[25 Percent ME Group |25% ME Group]] == Government: Representatives and organizations == === Good === *“Although I have heard of Chronic Fatigue Syndrome, I don’t have any expertise in it. … What I promise I will do when I get back is I will have the [[National Institutes of Health]] explain to me what they are doing, and to see if they can do more on this particular issue.”<ref>[http://sacfs.asn.au/news/2012/11/11_01_opinion_moving_forward_on_cfs.htm President Obama Response to Courtney Miller - 4/21/2011]</ref><ref>[https://www.youtube.com/watch?v=VsQcmKT3zSo Forgotten Plague Trailer #1 - Youtube 00:47]</ref> ~ President Barack Obama (2012) *"Health bureaucrats just sharply revised down estimates of how much research funding goes into trying to understand [[Myalgic Encephalomyelitis]] / [[Chronic Fatigue Syndrome]] ([[ME/CFS]]). They then clarified that there is no other Commonwealth support out there, either for people dealing with this condition, or for GPs. It is time this changed."<ref>[http://sacfs.asn.au/news/2016/02/02_12_senator_scott_ludlum_on_mecfs_research_funding_in_australia.htm SACFS - Senator Scott Ludlam 2/10/16]</ref> ~ Senator [[Scott Ludlam]] *"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."<ref>http://www.euro-me.org/news-Q42011-003.htm</ref> ~ Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health *"We need a commitment from the Minister to increase the sparse funding for ME research, which at present stands at a paltry £1 for every sufferer."<ref name=":0">{{Cite web | url = https://www.theyworkforyou.com/debates/?id=2019-01-24a.421.0&s=speaker%3A25669#g434.1 | title = Appropriate M.E. Treatment {{!}} UK Parliament Debate | last = Hansard | first = | authorlink = | date = Jan 24, 2019 | website = |language=en|archive-url=|archive-date=|url-status=|access-date=2019-01-25}}</ref> ~ [[Emma Lewell-Buck]] *"The now widely discredited PACE trial had far-reaching implications. Not only did it add to the existing myths around ME, but it led to alterations in the application of benefits and eligibility for social care."<ref name=":0" /> ~ [[Emma Lewell-Buck]], MP *"Regarding the classification of chronic fatigue syndrome and myalgic encephalomyelitis, or CFS/ME, the Government accept the World Health Organization’s classification of the illness as a neurological condition of unknown origin"<ref>{{Cite web | url = http://www.meassociation.org.uk/2017/07/countess-of-mar-and-lord-hunt-defend-mecfs-in-lords-debate-on-medically-unexplained-symptoms-05-july-2018/ | title = Countess of Mar and Lord Hunt defend ME/CFS in Lords debate on medically unexplained symptoms {{!}} 05 July 2017 | last = ME Association | first = | authorlink = ME Association | date = Jul 5, 2017 | website = [[The ME Association]]|language=en|archive-url=|archive-date=|url-status=|access-date=2018-11-28}}</ref> ~ Lord O’Shaughnessey, House of Lords, [[UK]] *"Given that ME causes extreme fatigue, suggesting more exercise seems to me about as sensible as asking frostbite sufferers to walk about in snow. The other suggested treatment, cognitive behavioural therapy, helped to underpin the myth that ME is a psychological problem, not a physical condition.<ref name="hansardjan19">{{Cite web | url = https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment | title = Appropriate ME Treatment {{!}} 24 January 2019 Volume 653 | last = Hansard {{!}} UK Parliament | first = | authorlink = | date = Jan 24, 2019 | website = hansard.parliament.uk|archive-url=|archive-date=|url-status=|access-date=2019-01-25}}</ref> ~ Kelvin Hopkins, MP === Bad === === Ugly === == Others and anonymous == === Good === *'"Recovery"... required ludicrously far-fetched imputations.'<ref>[https://docs.google.com/document/d/1C5Gk1kVacIeg41BfFO7xcNDEhr4W6L8ocuchnIh_wL4/edit?pref=2&pli=1 The PACE Trial, making up Recovery to suit themselves - Peter Kemp -2/17/16]</ref> ~ [[Peter Kemp]] *"...believing ME/CFS is a condition that can be cured by [[illness beliefs |attitude]] and [[Graded exercise therapy |effort]] is [[stigma]]tizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves (or get blamed) for their suffering..."<ref name="Bastian2016">{{Cite web | url = https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/ | title = Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much | last = Bastian | first = Hilda | authorlink=Hilda Bastian | date = Feb 8, 2019 | website = [[PlosOne]]|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-03-03}}</ref> ~ [[Hilda Bastian]] === Bad === === Ugly === == See also == * [[List of quotes]] * [[Ethical issues]] * [[Stigma and discrimination]] ==More quotes== *[http://www.margaretwilliams.me/1996/denigration-by-design-vol1.pdf Denigration by Design? (Vol 1)] *[http://www.margaretwilliams.me/1999/denigration-by-design-update.pdf Denigration by Design Update (Vol 2): A Review of the Role of Simon Wessely in the Perception of ME 1996-1999] *[https://web.archive.org/web/20170327233955/http://www.meactionuk.org.uk/wessely.html Weasel Words - Simon Wessely]<ref name="weaselwords">{{Cite web | url = http://www.meactionuk.org.uk/wessely.html | title = Weasel Words | last = ME Action Network | first = | date = 2017-03-27 | website = |archive-url=https://web.archive.org/web/20170327233955/http://www.meactionuk.org.uk/wessely.html|archive-date=2017-03-27|url-status=dead|access-date=2018-12-03}}</ref> *[http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm Wessely's Way: Rhetoric or reason?]<ref name="wesselysways">{{Cite web | url = http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm | title = Invest in ME - Margaret Williams - Wesselys Ways: Rhetoric or reason? | last = Williams | first = Margaret | authorlink=Margaret Williams | last2 = Hooper | first2 = Malcolm | authorlink2 = Malcolm Hooper | date = |website=[[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2018-12-03}}</ref> *[https://niceguidelines.blogspot.com/2011/07/professor-hooper-wesselys-words.html Wessely's Words Revisited]<ref name="wesselyswordsrevisted">{{Cite web | url = https://niceguidelines.blogspot.com/2011/07/professor-hooper-wesselys-words.html | title = THE NICEGUIDELINES BLOG: Professor Hooper: Wessely’s Words Revisited | last = Dr Speedy | first = | date = 2011-07-30 | website = THE NICEGUIDELINES BLOG|access-date=2018-08-29 | authorlink = Nice guidelines blog|archive-url=|archive-date=|url-status=}}</ref> == References == {{Reflist}} [[Category:Quotations]] [[Category:Lists]]
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