99 Quotes About Myalgic-encephalomyelitis

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.

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.

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.

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

Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it.

we see cardiac diastolic dysfunction in almost every case... there are patients whose diastolic dysfunction is so low/poor that they would fit well into a cardiac ward awaiting transplant...The whole idea that you can take a disease like this [M.E./Chronic Fatigue Syndrome] and exercise your way to health is foolishness. It is insane.

There are many reports that suggest a biomedical basis for post-exertional malaise. This is inconsistent with the assumption that there is pathological avoidance of exertion in ME/CFS, and makes it difficult to believe that exercise leads to improvement.

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.

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.