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Firestormm , I doubt that they could get away with claiming the 2 day CPET does not mean anything. CPET is gold standard testing for disability, with 50 years of research behind it, and is used in every hospital in the world. I am paraphrasing, I think, Don Staines here, in that doctors who prescribe GET for ME should be struck off the medical register. The onus is on them to show that established testing for disability is not valid for a patient, not to guess its not valid and experiment with that patient's health. They should also be sued for
criminal malpractice, which will bypass most of their legal protections I suspect. I think its time that legal, including criminal, sanction should be considered.
The way to treat this is indeed in some cases exercise, and gradual, but the practice is defined by testing and exercise experts, not psychiatrists, and so does not resemble any formal sort of GET out there. Further it has been shown in individual cases (and may be unethical to do this in a large cohort) that it is indeed possible to get patients to exercise harder and for longer in a graded fashion, but this can result in us in a
decline in fitness, as noted by Stacy Stevens. Simply doing more exercise is not necessarily reflected in an improvement in functional capacity. Its a false gain.
Patients are lining up to volunteer to do this testing, and also paying for it. It does our community a disservice to believe we don't do things that have strong evidence backing them. However I do think nobody should be forced into doing this kind of testing. I am concerned that insurance agencies, and government organizations like DWP might threaten to sanction people who do not do testing, and so create a situation where they are indirectly forced into testing.
We do need other tests. I am hopeful that one or a combination of other biomarkers might work to be diagnostic. I am also concerned about this however as it might require spinal fluid, which is a dangerous test. A small percentage can become paralyzed after such testing.
Only a blood based diagnostic marker is going to be both safe and usable on the most severe patients.
The thing about the 2 day CPET is that with some more validation studies it might make ME legitimate, which might help get better funding for the diagnostic alternatives. I suspect the 2 day CPET might be our first diagnostic test, but I also suspect it will be quickly superseded.