Myalgic Encephalomyelitis Quotes

“Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.”
― Joseph Dumit

“It's extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
― Anthony Fauci

“If I have found promise, it is because I’ve squeezed it from the seemingly impossible.”
― Naomi Whittingham

“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.”
― Nina Muirhead

“If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.”
― Toni Bernhard

“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

“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 Evaluation”... As the trial progressed and the results did not meet the authors’ expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recovered”. 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

“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

“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

“Sophia’s case sheds light on CFS because there were changes in her dorsal ganglia – the gatekeepers to sensation in the brain – and we know that fatigue depends on sensory perception.”
― Abhijit Chaudhuri

“Pacing is much easier if you try to live life, but within your limitations. Luckily, pacing often makes it possible to have a life despite ME. It might be a small life, but it will still be your own.”
― Ingebjørg Midsem Dahl, Classic Pacing for a Better Life with ME

“Pacing consists of listening to your body, and seeing symptoms as signs, usually of overactivity. You use information from your body to reorganise your activities to get as low a symptom level as possible. This usually means splitting activities into smaller bits and taking frequent rest breaks. It also means finding less strenuous ways of performing activities. When less energy is spent on some activities, you’ll have more energy left over to have fun.”
― Ingebjørg Midsem Dahl, Classic Pacing for a Better Life with ME

“We've got to do better, I thought. This story of injustice had continued on far too long. It's time for the misinformation and stigmatization surrounding ME/CFS to stop. Our leaders need to step up to the plate, acknowledge past mistakes, and fix them. All the evidence is there in black and white. More research funding to find a cure would prevent so much unnecessary suffering and save lives.”
― Tracie White, The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son

“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

“There's nothing the medical world can do to cure you, you just live with it [M.E.].”
― Beth French

“From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. 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.”
― Nina Muirhead

“For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies.

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

“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 crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states.”
― Melvin Ramsay

“The label ‘chronic fatigue syndrome’ (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 encephalomyelitis’ (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

“Post-exertional malaise (PEM) is the hallmark clinical feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”
― Todd E. Davenport

“Myalgic Encephalomyelitis is a systemic disease with many systemic features but it is characterised primarily by CNS dysfunction and not by fatigue.”
― Byron Hyde, The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome