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

“I have continued to get sicker in part because I refuse to rest as much as I should, because I am optomistic and because I push myself.”
― Whitney Dafoe

“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,â€� 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

“He has so little energy in his body that he can only walk to the bathroom on the other side of the hallway twice a day.

After a few meters he is worn out, much worse than after the marathons he used to run. He was a triathlete, he earned a brown belt in judo, became Dutch champion in hockey, until he contracted pneumonia in 2005 and never recovered. Ever since, he has a headache, vertigo, and insomnia, but worst of all the fatigue: after minimal effort his muscles would lose all their strength and take days to recover. Only after a few years did he get a diagnosis: Chronic Fatigue Syndrome (CFS).”
― Ellen de Visser

“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

“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

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

“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

“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

“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

“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

“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

“I have a wish and a dream that medical and scientific societies will apologise to their ME patients.”
― Jose Montoya

“the 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.”
― Charles Shepherd

“So, here’s the story about that: I was a member of ACT-UP in New York for two years, from its inception in 1986. I was a young gay man and everyone I knew was dying. In 1988, I moved to San Francisco to become a newspaper reporter at the San Francisco Chronicle, and that ended my life as an “activist.â€� To attribute my current work on PACE and related issues to what I did 30+ years ago is preposterous. My opinion that the PACE trial is a piece of crap and likely qualifies as research misconduct is based upon my public health training and expertise.”
― David Tuller

“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