Individual quotes

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." ~ 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." ~ Dr Nina Muirhead
• “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

• "The germ is nothing; the terrain is everything." ~ 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 ~ Dr. Jarred Younger

• "There is nothing that you hold dear that this illness cannot take from you. Nothing." ~ 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." ~ 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." ~ 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." ~ 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

• "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

• "Subjective measures of sick people before & after they are repeatedly told, "You're not sick" is a social psych study, not a clinical trial." ~ Michael VanElzakker on the PACE trial

• "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.'" ~ 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
• "[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.
  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." - Dr Charles Shepherd

• "I have a wish and a dream that medical and scientific societies will apologise to their ME patients" ~ Dr Jose Montoya, 2015
• “ME is in the blood, not between the ears.” 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 was a good trial; I once described it as a thing of beauty." ~ 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"- 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." ~ Dr. Brian Walitt

• "If [ME/CFS] is all in your head, it's only because your head is part of your body." ~ 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
• "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
• "... 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..." ~ 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." ~ 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

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)

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
• "It’s still an impossible diagnosis—too serious to be fake, too subjective to be real" ~ Alice Hattrick

• "I disappeared entirely and no one knew why. Among the people who hadn't a clue was me." ~ 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!" ~ Stuart Murdoch

Patients and advocates

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⁾." ―Dr Maik Speedy (Dec 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 163(11): 884.

• "We're sick, not tired" ~ Julie Rehmeyer, science writer with ME/CFS
• "None of you are sick with ME/CFS because of how you live or think." ~ Whitney Dafoe

• "DYING" ~ Whitney Dafoe

• “You wake up one day with a bad flu and it never goes away. Ever.” ~ 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." ~ 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" ~ Lisa England

• "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

• "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

• "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

• When he (Brian Walitt) says that fibromyalgia is real to patients, he, of course, means it’s not real to him. ~ Jeannette Burmeister

• "For most patients CFS isn't a diagnosis, it's an accusation." ~ @fabrahamwriter

• "It’s the utter cluelessness about who we are that is disturbing." (About NIH Post-Infectious ME/CFS Study) ~ 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." ~ @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" ~ @SKWixey

• “Psychiatry has become the place where we shunt illnesses that we don’t yet understand.” ~ Jennifer Brea

• "Will @Lancetpsychiatry PACE proved to be #MECFS Stonewall?" ~ 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." ~ @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)

Advocacy organizations

Good

• "Advise patients to listen to their bodies and to stop activities before they exceed their tolerance threshold." ~ 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." ~ 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." ~ Invest in ME Research
• "CBT/GET must be dropped as recommendations for treatment of ME." ~ 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." ~ 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." ~ 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." ~ 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." ~ Simon Lawrence, 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.” ~ 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." ~ 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." ~ 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." ~ 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." ~ 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" ~ 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. ~ Kelvin Hopkins, MP

Others and anonymous

Good

• '"Recovery"... required ludicrously far-fetched imputations.' ~ 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..." ~ Hilda Bastian

See also

• List of quotes
• Ethical issues
• Stigma and discrimination

More quotes

• Denigration by Design? (Vol 1)
• Denigration by Design Update (Vol 2): A Review of the Role of Simon Wessely in the Perception of ME 1996-1999
• Weasel Words - Simon Wessely
• Wessely's Way: Rhetoric or reason?
• Wessely's Words Revisited

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

spoon theory An analogy which equates the amount of ability that someone with chronic illness has to complete daily tasks to a limited number of spoons. People with chronic illnesses who must ration their energy throughout the day are sometimes referred to as "spoonies". (Learn more: butyoudontlooksick.com)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

See ME/CFS.

cognition Thought processes, including attention, reasoning, and memory.