Individual quotes

Good

 * “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.” ~ Dr. Ronald Davis


 * "I have a wish and a dream that medical & research societies in US apologise to ME/CFS patients" ~ 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.” ~ 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.' ~ Dr. Nancy Klimas


 * "Input from the patients is absolutely critical for any disease that you want to study." ~ Dr. Avindra Nath


 * "This illness is wicked." ~ Dr. Nancy Klimas

Bad

 * "I have previously made it clear that I [Wessely] think that PACE was a good trial; I once described it as a thing of beauty." ~ Professor Simon Wessely

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." ~ David Tuller

Ugly

 * “It was written up in Rolling Stone magazine and labeled the ‘Yuppie Flu.’” ~ William Atkinson

Celebrity Patients

 * “Fatigue is what we experience, but it is what a match is to an atomic bomb.” ~ 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!" ~ Stuart Murdoch


 * "I disappeared entirely and no one knew why. Among the people who hadn't a clue was me." ~ Howard Bloom

Patients and Advocates

 * "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." ~ Robert Courtney


 * A Twitter Poem ~ @batteredoldbook ~ James David Chapman

''"F off.

''Now F off a little further.

''Bit more.

''Bit more. Now F off completely" ~ Graded Exercise Therapy.


 * 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" ~ Lisa England


 * "DYING" ~ Whitney Dafoe


 * "Think of Madoff or Enron in charge of a disease." #PACEtrial #CDC30YRS #MEclinics #OutcomeSwitching #CheaperThanResearch #FollowTheMoney ~ 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.' ~ Ryan Prior


 * "When the check came I couldn't sign my name." - "My brain was burning." ~ 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.” ~ Hillary Johnson from Osler's Web

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.” ~ 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." ~ Senator Scott Ludlam

Good

 * '"Recovery"... required ludicrously far-fetched imputations.' ~ Peter Kemp MA


 * "For most patients CFS isn't a diagnosis, it's an accusation." ~ Anonymous