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Quote by Trevor Butterworth

“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”

Quote by Trevor Butterworth

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Trevor Butterworth

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“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)”

Cfs Chronic Fatigue Syndrome Me Cfs Me Cfs Quotes Invisible Illness Stigma Invisible Illness Quotes Biopsychosocial

Book:Chronic Fatigue Syndrome

Source: 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 – like many stories – 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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Mark Vink

Author:Cort Johnson

“Activities of daily living utilize energy and are in themselves, exercise. These activities may constitute an optimum amount of exercise for some patients or an excessive amount of exercise for others while for some patients, adding a suitable exercise program (exercise therapy) can improve function and quality of life.”

Exercise Activity Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy

Author:Fred Friedberg

“While there are now fresh moves to revise NICE guidelines on CFS/ME in the United Kingdom, these advances are likely to have been hindered by the scale of epistemic injustices experienced by patients with ME/CFS (NICE 2017). Of the valuable participants in the ongoing discourse about ME/CFS, it is patients who are not only the most vulnerable but have the most to lose.”

Injustice Bias Authoritarianism Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Health Service Stigna

Author:Charlotte Blease

“The severe exacerbation of symptoms following exercise, as seen in CFS patients, is not present in other disorders where fatigue is a predominant symptom such as depression, rheumatoid arthritis, systemic lupus erythematosus, or multiple sclerosis. 10,11”

Exercise Chronic Fatigue Syndrome Me Cfs Invisible Illness Post Exertional Malaise

Author:Jo Nijs

“I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organization (WHO) has not changed its position on these disorders... Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included in this category. However, post-viral fatigue syndrome is explicitly excluded from F48.0.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs World Health Organization Neurasthenia

Author:Benedetto Saraceno

“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.”

Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes

Author:Mark Vink

“Patients find GET harmful Since patient surveys ask whether symptoms got worse, therapies can also be ranked in terms of which cause the most harm. In three large surveys, GET consistently ranked highly for harm, meaning that a higher proportion of patients reported that their symptoms worsened with GET than with other approaches. GET ranked 2nd most harmful of 20 therapies, 1st of 25 and 1st of 15 (Action for ME, 2014: 19; The ME Association, 2010: 10; Action for ME, 2008: 13, respectively).”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy Stopget

Author:Karen Kirke

“The largest and most recent ME Association survey (ME Association, 2015) of patient evidence on the acceptability, efficacy and safety of CBT, GET and Pacing involved 1428 respondents. In this case, 73 per cent of respondents reported that CBT had no effect on their symptoms and 74 per cent reported that their symptoms were made worse by GET.”

Exercise Treatment Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Nhs Graded Exercise Therapy Cbt Cfs Me Stopget

Author:Charles Shepherd

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Mark Vink

Author:Cort Johnson