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Myalgic encephalomyelitis and chronic fatigue syndrome quotes from me-pedia.org

Notable quotes about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from researchers, doctors, advocates, patients, jouranlists, and celebrities.

Researchers, scientists, doctors and professors[edit | edit source]

Good[edit | edit source]

  • “I’m shocked that The Lancet published it…The 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.”[1] ~ Dr. Ronald Davis
  • "I have a wish and a dream that medical & research societies in US apologise to ME/CFS patients"[2] ~ 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.”[3] ~ 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.'[4] ~ Dr. Nancy Klimas
  • "Input from the patients is absolutely critical for any disease that you want to study."[5] ~ Dr. Avindra Nath
  • "Fatigue is not a disease, and it's not even a symptom. Fatigue is an alarm system." @6:02[8] ~ Dr. Jarred Younger
  • "There is nothing that you hold dear that this illness cannot take from you. Nothing."[9] ~ 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."[10] ~ Betsy Keller, PhD
  • "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."[11] ~ 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." [12] ~ 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[13]
  • "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[14]
  • "Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."[15] ~ Michael VanElzakker
  • "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.'"[16] ~ 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[17]

Bad[edit | edit source]

  • "I have previously made it clear that I think that PACE was a good trial; I once described it as a thing of beauty."[18] ~ 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"[19]- Peter D. 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."[20] ~ Dr. Brian Walitt
  • "If [ME/CFS] is all in your head, it's only because your head is part of your body."[21] ~ Dr. Brian Walitt

Ugly[edit | edit source]

  • "...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[22]
  • "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[23]
  • "... 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..."[24] ~ Nurse supervisor, FINE trial

Journalists and media[edit | edit source]

Good[edit | edit source]

  • "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."[25] ~ 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[26]

Bad[edit | edit source]

  • "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)[27]

Ugly[edit | edit source]

Celebrity patients[edit | edit source]

  • “Fatigue is what we experience, but it is what a match is to an atomic bomb.”[29] ~ Laura Hillenbrand
  • "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!"[30] ~ Stuart Murdoch
  • "I disappeared entirely and no one knew why. Among the people who hadn't a clue was me."[31] ~ Howard Bloom

Patients and advocates[edit | edit source]

  • 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.
    Graded exercise therapy and cognitive behavioral therapy - harm caused. [[Maik Speedy]]
    "DYING"[32] ~ Whitney Dafoe
  • “You wake up one day with a bad flu and it never goes away. Ever.”[33] ~ 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."[34] ~ Robert Courtney
  • A Twitter Rant ~ @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"[35] ~ Lisa England
  • "Think of Madoff or Enron in charge of a disease." #PACEtrial #CDC30YRS #MEclinics #OutcomeSwitching #CheaperThanResearch #FollowTheMoney[36] ~ 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."[37] ~ Ryan Prior
  • "When the check came I couldn't sign my name...My brain was burning."[38] ~ 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.”[39] ~ Hillary Johnson from Osler's Web
  • "I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."[43] ~ @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"[44] ~ @SKWixey
  • “Psychiatry has become the place where we shunt illnesses that we don’t yet understand.”[45] ~ Jennifer Brea
  • "Will @Lancetpsychiatry PACE proved to be #MECFS Stonewall?"[46] ~ 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."[47] ~ @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 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." ~ Dr Maik Speedy, Annals of Internal Medicine (2015)[48]

Advocacy organizations[edit | edit source]

Good[edit | edit source]

  • "Advise patients to listen to their bodies and to stop activities before they exceed their tolerance threshold."[49] ~ Forward-ME
  • "CBT/GET have been proven to be based on non-science for ME and should be removed from any recommendations in the guideline."[50] ~ Invest in ME Research
  • "CBT/GET must be dropped as recommendations for treatment of ME."[51] ~ 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."[52] ~ 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."[53] ~ 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."[54] ~ Sonya Chowdhury, Chief Executive, Action for ME
  • "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."[55] ~ Simon Lawrence, 25% ME Group

Government: Representatives and organizations[edit | edit source]

Good[edit | edit source]

  • “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.”[56][57] ~ President Barack Obama
  • "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."[58] ~ 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."[59] ~ 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."[60] ~ 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."[60] ~ 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"[61] ~ 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.[62] ~ Kelvin Hopkins, MP

Bad[edit | edit source]

Ugly[edit | edit source]

Others and anonymous[edit | edit source]

Good[edit | edit source]

  • '"Recovery"... required ludicrously far-fetched imputations.'[63] ~ Peter Kemp
  • "...believing ME/CFS is a condition that can be cured by attitude and effort is stigmatizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves (or get blamed) for their suffering..."[64] ~ Hilda Bastian

Bad[edit | edit source]

Ugly[edit | edit source]

See also[edit | edit source]

More quotes[edit | edit source]

References[edit | edit source]

  1. #MEAction - Investigative Journalist Exposes PACE Trial - Ronald Davis
  2. 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
  3. James Coyne “lays waste” to PACE trial in Edinburgh - Phoenix Rising
  4. Canary in a Coal Mine You Tube 00:05
  5. Transcripts and Slides from Dr Nath’s talk on NIH study - #MEAction - CDC Grand Rounds Dr. Avindra Nath - 2/16/16
  6. This illness is wicked - ME - Youtube 1:19 - Nancy Klimas
  7. "The germ is nothing; the terrain is everything."
  8. "Fatigue is not a disease, and its not even a symptom. Fatigue is an alarm system." @6:02
  9. "There is nothing that you hold dear that this illness cannot take from you. Nothing."
  10. "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."
  11. "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."
  12. "Ultimately the best way to prevent suicide in ME/CFS will be to find effective disease-modifying treatments or cures for it."
  13. “(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.”
  14. “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.”
  15. "Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial."
  16. "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.'"
  17. Shepherd, Charles B (2017). "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 of Health Psychology. doi:10.1177/1359105317703786. 
  18. Pro-PACE, anti-PACE - Statistical Modeling, Causal Inference, and Social Science
  19. White, Peter D.; KA, Goldsmith; Johnson, AL; Walwyn, R; Baber, HL; Chalder, T; Sharpe, M; on behalf of all the co-authors (2011). "Response to the complaint to The Lancet of March 2011" (PDF). Forward-ME. The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME 
  20. #MEAction Transcript - Video Interview with Dr. Brian Walitt
  21. NIH Gears Up for First-Ever Chronic Fatigue Study Patients' advocates share concerns about trial protocol, bias MedPage Today - The Gupta Guide - Shannon Firth
  22. "Trial By Error: An Australian Exchange with Professor Sharpe". www.virology.ws. Retrieved Nov 28, 2018. 
  23. Hawkes, Nigel (Jun 22, 2011). "The dangers of research into CFS/ME" (PDF). BMJ. 342 (d3780): 1392–1384. doi:10.1136/bmj.d3780. 
  24. Peters, Sarah; Wearden, Alison; Morriss, Richard; Dowrick, Christopher F; Lovell, Karina; Brooks, Joanna; Cahill, Greg; Chew-Graham, Carolyn (Dec 2011). "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". Implementation Science. 6 (1). doi:10.1186/1748-5908-6-132. ISSN 1748-5908. PMC 3259041Freely accessible. PMID 22192566. 
  25. Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough - California Magazine - David Tuller 11/18/2015
  26. http://voicesfromtheshadowsfilm.co.uk/2013/llewellyn-king-article-chronic-fatigue-syndrome-hidden-in-plain-sight/
  27. Family Practice News on Dr. Brian Walitt 9/30/15
  28. Managed Care - William Atkinson - October 2010
  29. SCOPE - Stanford Medicine - Laura Hillenbrand - 10/22/14
  30. LDIFME - Awareness > Message from Stuart Murdoch - 11/11/2015
  31. Canary in a Coal Mine Preview - ME (CFS) 2:17
  32. Chronic Fatigue Syndrome Research Center at Stanford University - Face Book - Whitney Dafoe - 12/29/2015
  33. TheAtlantic.com "Quoted: the best quotes we heard from our sources today," October, 8, 2015 [1]
  34. PubPeer Comment - Robert Courtney - 2/16/16
  35. A Twitter Rant @2lisaland
  36. Twitter - @FibroMEcfs
  37. Telling the Story of a Forgotten Plague: Chronic Fatigue Syndrome - Wish Dish - Ryan Prior
  38. Canary in a Coal Mine Preview - ME (CFS) - You Tube 2:09 - 2:15 Jen Brea
  39. Hillary Johnson from Osler's Web
  40. Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience? - J. K. Burmeister 2/21/16
  41. For most patients CFS isn't a diagnosis, it's an accusation - ~ @fabrahamwriter
  42. #MEAction’s Questions for NIH’s Intramural Study Team - Comments - Mary Schweitzer
  43. "I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."
  44. 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
  45. Jen Brea @ TedSummit - MEAction
  46. https://twitter.com/coyneoftherealm/status/661318252312694784
  47. 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.
  48. Speedy, Maik (Dec 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (PDF). Annals of Internal Medicine. 163 (11): 884. 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.
    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 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.
     
  49. Forward-ME (Jul 2018). "Consultation on draft scope | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)" (PDF). 
  50. Invest in ME Research (July 2017). "Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis". www.investinme.org. Retrieved Feb 7, 2019. 
  51. Invest in ME Research (July 2017). "Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis". www.investinme.org. Retrieved Feb 7, 2019. 
  52. Invest in ME Research (July 2017). "Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis". www.investinme.org. Retrieved Feb 7, 2019. 
  53. Invest in ME Research (July 2017). "Response to NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis". www.investinme.org. Retrieved Feb 7, 2019. 
  54. Chowdhury, Sonya (Aug 29, 2017). "The PACE trial and behavioural treatments for M.E." Action for ME. Retrieved Feb 9, 2019. 
  55. ME Association (Jun 2007). "MEA support statement on wasteful research". ME Association. Retrieved Mar 4, 2019. "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 
  56. President Obama Response to Courtney Miller - 4/21/2011
  57. Forgotten Plague Trailer #1 - Youtube 00:47
  58. SACFS - Senator Scott Ludlam 2/10/16
  59. http://www.euro-me.org/news-Q42011-003.htm
  60. 60.060.1 Hansard (Jan 24, 2019). "Appropriate M.E. Treatment | UK Parliament Debate". Retrieved Jan 25, 2019. 
  61. ME Association (Jul 5, 2017). "Countess of Mar and Lord Hunt defend ME/CFS in Lords debate on medically unexplained symptoms | 05 July 2017". www.meassociation.org.uk. Retrieved Nov 28, 2018. 
  62. Hansard | UK Parliament (Jan 24, 2019). "Appropriate ME Treatment | 24 January 2019 Volume 653". hansard.parliament.uk. Retrieved Jan 25, 2019. 
  63. The PACE Trial, making up Recovery to suit themselves - Peter Kemp -2/17/16
  64. Bastian, Hilda (Feb 8, 2019). "Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much". PlosOne. Retrieved Mar 3, 2019. 
  65. ME Action Network (Mar 27, 2017). "Weasel Words". Archived from the original on Mar 27, 2017. Retrieved Dec 3, 2018. 
  66. Williams, Margaret; Hooper, Malcolm. "Invest in ME - Margaret Williams - Wesselys Ways: Rhetoric or reason?". www.investinme.org. Retrieved Dec 3, 2018. 
  67. Dr Speedy (Jul 30, 2011). "THE NICEGUIDELINES BLOG: Professor Hooper: Wessely's Words Revisited". THE NICEGUIDELINES BLOG. Retrieved Aug 29, 2018. 

Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

Myalgic encephalomyelitis or chronic fatigue syndrome

Cognitive behavioral therapy[citation needed]

Graded Exercise Therapy, a gradual increase in exercise or activity, according to a pre-defined plan.<ref name="pace2011a">{{Cite journal


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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history