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“You get ill, you are accused of being mentally ill, denied effective treatment, then when you campaign for ‘real scienceâ€�, you are accused of terrorising those who do not believe in your illness...after all, if your message is that people who say they are suffering from ME or CFS are mentally ill, then accusing them of irrational attacks adds strength to your case.”
― Martin J. Walker, Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

“MEâ€� as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndromeâ€�; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.”
― Charlotte Blease

“Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.”
― Charlotte Blease

“A heated and often bitter debate persists over whether chronic fatigue syndrome (or myalgic encephalomyelitis (or the postviral fatigue syndrome) is physical or psychological. Although many doctors avoid controversy by stating the obvious—namely, that the mind-body split is artificial and all diseases have physical and mental components—what is really at issue is whether this illness is real or imaginary.”
― Karen Prince

“When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favouredâ€� list. In the 1980s, newspapers helped coin the dismissive label “yuppie fluâ€�; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faultyâ€� illness beliefs.”
― Charlotte Blease

“PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared)... PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review”
― Trevor Butterworth

“The new name 'Chronic Fatigue Syndrome' is far too benign. It trivialises. How seriously would you take something called 'Chronic Thirst Syndrome'? And yet, diabetes is a very serious condition. 'Disabling Fatigue and Immune Dysfunction Syndrome' does a bit better; while more research should allow something more specific.

(Thompson, 1992:27)”
― D Thompson, Chronic Fatigue Syndrome

“Mark Vink is a physician in the Netherlands who suddenly fell ill with chronic fatigue syndrome (ME/CFS). He wasn’t just your typical physician; he also happened to have a brown belt in judo, was the former captain of a Dutch national field hockey championship team and was a marathoner and triathlete.
In other words, the guy was a stud who loved to test himself physically � the last person anyone would ever expect to get ME/CFS. Or end up bed bound. Or end up using a six yard tramp from his bed to the bathroom to test his exercise capacity.

But that’s what happened. Mark Vink’s ME/CFS story â€� like many stories â€� is so striking in its suddenness and so devastating in its comprehensive that it beggars the mind to think that anyone could believe his downfall could have other than a physiological cause.”
― Cort Johnson

“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

“The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.”
― Carol Monaghan

“The psychological view of ME led to the controversial and now debunked PACE trial—PACE is “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluationâ€�... As the trial progressed and the results did not meet the authorsâ€� expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recoveredâ€�. That is simply not good science.”
― Carol Monaghan

“ME sufferers know full well that there is no present cure for this debilitating illness but equally they do not expect or understand why there is substantial denial within the medical profession of the existence of ME/CFS as a physical condition.”
― Nina Muirhead

“ME/CFS is not a rare illness, so how could doctors be getting it so wrong? Have we stopped believing in an entire class of patients for whom we don’t yet have the technology to diagnose or drugs to prescribe?”
― Nina Muirhead

“Mark Vink is a not a typical ME/CFS patient. He is severely ill. It takes him twelve hours to recover from a walk from his bed to the bathroom. While he’s not typical he may not be that uncommon, though. Some estimates suggest that about 25% of ME/CFS patients are home bound or bedridden. Few ever make it into research studies.”
― Cort Johnson

“You have no idea what I have been through or how hard I have tried to wait out, overcome, and make the best of a devastating illness that has slowly made all of my dreams more and more difficult to achieve.”
― Whitney Dafoe

“The diagnosis ME requires both M and E problems, whereby M stands for Myalgic i.e. muscle pain and muscle energy production problems and E for Encephalomyelitis, i.e. specific neurological, neuroimmune and neurocognitive problems.”
― Mark Vink

“The Commissioner asserts 'motivated intruders' evidence from Professor Anderaon was accepted under cross-examination as an 'over-extension' from his personal experiences with completely unrelated animal rights activists - see para.24 of the closing submissions, Professor Anderson's "wild speculations" about the possibility of "young men, borderline sociopathic or psychopathic" attaching themselves to the PACE trial criticism 'do him no credit". Nor do his extrapolations from benign Twitter requests for information to an "organised campaignâ€� from an "adversarial group" show that he has maintained the necessary objectivity and accuracy that he is required to maintain. He does not distinguish between legitimate ethical and political disagreement, and the use of positions of access to confidential data. He stated that where there was legitimate disagreement one should assume that people will act in unlawful ways, This proposition that one should in every case assume the absolute worst about data disclosure is clearly neither sensible nor realistic.

Freedom of Information Act tribunal judgment”
― Brian Kennedy

“After a patient of his with pneumonia coughed in his face, Vink’s energy and endurance quickly tanked. He estimated that from one day to the next he lost 70-80% of the power in his legs. Very quickly this former marathoner was unable to walk 30 yards without having to rest for 15 minutes. He also experienced severe dizziness, headaches (for the first time in his life) and problems sleeping. Graded exercise therapy (GET) caused him to relapse further and he ended up bedridden.”
― Cort Johnson

“My very high lactate levels after this trivial walk also show that this trivial walk is very strenuous exercise for me which I have been doing twice a day for a number of years and if exercise would really be the answer to this disease, on the one hand I would not have fallen ill with this disease and on the other I would have long exercised myself back to full fitness as my very high lactate levels show that I do my upmost.”
― Mark Vink

“The study by Falk Hvidberg et al. [69] confirms the findings from the health status report by Komaroffet al. from 1996 [70]. It also means that nothing has changed in the health situation of ME/CFS patients in the last 20 years and that means that the current 2 available treatments, CBT and GET, which have been heavily promoted for more than 20 years as the treatments for ME/ CFS, which most ME patients have tried, because they desperately want to get better, are not effective at all, or even harmful, as patients have been saying for a long time [32] which was confirmed and objectified by Black et al. [31].”
― Mark Vink

“ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue, but rather by a severe exacerbation of symptoms which manifest after a minor physical or mental exertion. This hallmark symptom characteristic of ME, known as Post-Exertional Malaise (PEM), can persist for days, weeks or consequently be a the trigger for a relapse or deterioration.”
― Anil van der Zee

“We believe CFS is a biological illness, manifest with complex interlinking between adverse thoughts, moods, emotions and physical symptoms.”
― Theo Anbu

“Many who were able to walk when they embarked on a course of graded exercise dropped out of the treatment in wheelchairs or bedbound.”
― Carol Monaghan

“It might sound strange but walking back and forth to the toilet is more difficult than running a marathon. However if you see my lactate levels of 8.0 mmol/l around the 5 minute mark, and 11.8 mmol/l around the 30 minutes mark, both produced by the same exercise, it means that the actual lactate production for this very trivial exercise is 19.8 mmol/l. That is a level that many professional athletes will never / not often reach and that sort of level of lactate makes it easy to understand why this trivial walk is so strenuous an exercise for me and more difficult than running a marathon. And it is therefore no wonder that I have severe loss of muscle power combined with severe muscle pain from this trivial walk to the toilet and back.”
― Mark Vink

“Remarkably, though sadly predictably, British psychiatrists still cling to the psycho-social model that has subverted meaningful research for the past 30 years, establishing the validity of Max Planck's observation that science progresses one retirement at a time.”
― Steven Lubet

“PVFS (post-viral fatigue syndrome)

This term was introduced during the eariy 1980s in Britain as an alternative to ME. It remains a useful description for anyone whose illness can clearly be traced back to an acute viral infection. The drawback to PVFS is that it cannot be used to describe cases where some other factor (e.g. vaccination or pesticide) acted as the principal trigger.”
― Charles Shepherd, Living with M.E.: The Chronic/Post-Viral Fatigue Syndrome

“It was some months before I acknowledged to myself that I had not improved, that I wasn't simply tired because I'd gone back to work, that my muscles ached regardless of whether I rested, and that the symptoms had remained a constant presence since their initial onset. Some symptoms such as the muscle pain were becoming worse. I went back to the medical practitioner.

I was now diagnosed with post-viral syndrome...
After 11 months from the initial onset, the medical practitioner told me that she thought I might have CFS.”
― Michele Kerry Travers

“Characteristically, after an initial viral insult patients have relapsing and remitting mental and physical exhaustion, which is brought on by varying degrees of physical and mental exertion and relieved by rest, the fatigue often being accompanied by consistent associated symptoms. These people cope at a reduced level of activity because of ill health, not fear of ill health.”
― Karen Prince

“The label ‘chronic fatigue syndromeâ€� (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitisâ€� (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).”
― Bruce Carruthers