Why go to all this trouble?
Surely exercise isn’t that big a deal, even in sick people.
Exercise is not curative in people with myalgic encephalomyelitis (ME), and makes many people worse. Patient surveys show this to be the case. Many patients report on an individual basis that after being treated with GET they never recovered to their former level of health. One participant in the PACE trial of 2011 recently reported, “I never regained function and have been sicker, ever since… I did not listen to my body, and I will never forgive myself.”
Exercise therapies are prescribed for people with ME under the assumption that patients could gain better health by increasing their activity levels over time. The vast majority of patients have tried to increase activity slowly over time again and again until they accepted the new limitations of their ill bodies. To state that what was standing in the way of full recovery was physician supervision is misguided and insulting.
ME patients have documented mitochondrial abnormalities and metabolic abnormalities, and simply do not have the resources to engage in activity in the manner of a healthy person.
Why this particular ask from these particular groups?
The authors were advised by people with relevant experience that the parties addressed in the petitions are capable of carrying out these actions to stop graded exercise therapy trials. For example, the Government does not like to be seen to directly intervene in research, as this is meant to be independent from politics. The government can ask research councils to review and reassess their approach to research though.
Why not place your focus on MAGENTA only?
The authors of these petitions consulted with numerous experts over the course of creating both the UK and Global Support petitions. Governmental officials in the UK advised us to keep our focus broad, and we agreed with this assessment.
PACE is followed by MAGENTA, which will be followed by GETSET. Focus on a single trial of graded exercise therapy for ME in the UK would be a mistake, if the next move would be to simply create another trial with another name to focus on another population.
Why haven’t you discussed biological abnormalities that would prove graded exercise therapy to be dangerous for patients?
MAGENTA and other GET trials are justified on the basis of the PACE trial. While it would be possible (and tempting) to list the many metabolomic, biological, and neurological issues found consistently in ME patients – the errors in metabolism and immunity – they are, in this case, besides the point. PACE was a very large study that found null results on follow-up, and showed a mild placebo-effect result in some patients in the short-term. PACE cannot be used to justify the effectiveness of GET or CBT, and that is inarguable.