Individual Quotes

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Researchers, scientists, doctors and professors[edit]

Good[edit]

  • “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

Bad[edit]

  • "I have previously made it clear that I think that PACE was a good trial; I once described it as a thing of beauty."[17] ~ Professor Simon Wessely
  • "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."[18] ~ Dr. Brian Walitt
  • "If [ME/CFS] is all in your head, it's only because your head is part of your body."[19] ~ Dr. Brian Walitt

Ugly[edit]

Journalists and media[edit]

Good[edit]

  • "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."[20] ~ 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[21]

Bad[edit]

  • "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)[22]

Ugly[edit]

Celebrity patients[edit]

  • “Fatigue is what we experience, but it is what a match is to an atomic bomb.”[24] ~ 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!"[25] ~ Stuart Murdoch
  • "I disappeared entirely and no one knew why. Among the people who hadn't a clue was me."[26] ~ Howard Bloom

Patients and advocates[edit]

  • "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."[27] ~ 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"[28] ~ Lisa England
  • "Think of Madoff or Enron in charge of a disease." #PACEtrial #CDC30YRS #MEclinics #OutcomeSwitching #CheaperThanResearch #FollowTheMoney[30] ~ 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."[31] ~ Ryan Prior
  • "When the check came I couldn't sign my name...My brain was burning."[32] ~ 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.”[33] ~ 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."[37] ~ @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"[38] ~ @SKWixey
  • “Psychiatry has become the place where we shunt illnesses that we don’t yet understand.”[39] ~ Jennifer Brea
  • "Will @Lancetpsychiatry PACE proved to be #MECFS Stonewall?"[40] ~ 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."[41] ~ @batteredoldbook

Advocacy organizations[edit]

Government: Representatives and organizations[edit]

Good[edit]

  • “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.”[42][43] ~ 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."[44] ~ 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."[45] ~ Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health

Bad[edit]

Ugly[edit]

Others and anonymous[edit]

Good[edit]

  • '"Recovery"... required ludicrously far-fetched imputations.'[46] ~ Peter Kemp, MA


Bad[edit]

Ugly[edit]

See also[edit]

List of Quotes

References[edit]

  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. Pro-PACE, anti-PACE - Statistical Modeling, Causal Inference, and Social Science
  18. #MEAction Transcript - Video Interview with Dr. Brian Walitt
  19. NIH Gears Up for First-Ever Chronic Fatigue Study Patients' advocates share concerns about trial protocol, bias MedPage Today - The Gupta Guide - Shannon Firth
  20. Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough - California Magazine - David Tuller 11/18/2015
  21. http://voicesfromtheshadowsfilm.co.uk/2013/llewellyn-king-article-chronic-fatigue-syndrome-hidden-in-plain-sight/
  22. Family Practice News on Dr. Brian Walitt 9/30/15
  23. Managed Care - William Atkinson - October 2010
  24. SCOPE - Stanford Medicine - Laura Hillenbrand - 10/22/14
  25. LDIFME - Awareness > Message from Stuart Murdoch - 11/11/2015
  26. Canary in a Coal Mine Preview - ME (CFS) 2:17
  27. PubPeer Comment - Robert Courtney - 2/16/16
  28. A Twitter Rant @2lisaland
  29. Chronic Fatigue Syndrome Research Center at Stanford University - Face Book - Whitney Dafoe - 12/29/2015
  30. Twitter - @FibroMEcfs
  31. Telling the Story of a Forgotten Plague: Chronic Fatigue Syndrome - Wish Dish - Ryan Prior
  32. Canary in a Coal Mine Preview - ME (CFS) - You Tube 2:09 - 2:15 Jen Brea
  33. Hillary Johnson from Osler's Web
  34. Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience? - J. K. Burmeister 2/21/16
  35. For most patients CFS isn't a diagnosis, it's an accusation - ~ @fabrahamwriter
  36. #MEAction’s Questions for NIH’s Intramural Study Team - Comments - Mary Schweitzer
  37. "I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."
  38. 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
  39. Jen Brea @ TedSummit - MEAction
  40. https://twitter.com/coyneoftherealm/status/661318252312694784
  41. 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.
  42. President Obama Response to Courtney Miller - 4/21/2011
  43. Forgotten Plague Trailer #1 - Youtube 00:47
  44. SACFS - Senator Scott Ludlam 2/10/16
  45. http://www.euro-me.org/news-Q42011-003.htm
  46. The PACE Trial, making up Recovery to suit themselves - Peter Kemp -2/17/16


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