Not just to prove a point. It's got to be a better option than months of GET.
What I was getting at was that if they are going to subject hundreds of people to GET (which they say is perfectly safe, and as they have already been doing for years) then they should be making sure that it doesn't cause adverse effects before they start the programme.
If patients were offered the 2-day CPET, or able to request it, if they were considering (or being told) to do GET then it would be on their medical notes as an objective test.
The CMRC/MEGA team have said that PEM will be included as a prerequisite(once they've decided how to define it) this will probably be included in some vague questionnaire.
The current NICE guidelines included PEM:
"characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) "
The NHS do not use PEM.
But also this is for diagnosis, not to check if someone will adversely be affected by GET.
( the 2-day CPET protocols need to be more clearly defined to minimise risk to patients.)
eta: I am NOT saying all people with ME should do 2-day CPETs.
We know and understand the dangers of GET but those patients who either participate in trials, or have GET foisted on them, mostly do not.
I would wholeheartedly agree - I think most of us would - that we would absolutely not wish to see 2-day CPET used as diagnostic test, but I think it would be good to have more trials - using volunteers who understand the risks - in order to demonstrate beyond doubt that PEM is caused by an abnormal physiological response to exercise, because that would rob the medical establishment of their last feeble excuses for offering GET as a "best" treatment.
That would, of course, mean that we'd then need proper advice to doctors on safe means of distinguishing PEM from normal exercise-induced fatigue so that they would know which patients to diagnose with ME and tell to rest, and which ones might benefit from an exercise programme (the distinction may seem obvious to us, but it seemingly isn't to the average doctor).
Plus it always strikes me that PEM is used fairly loosely, even within the M.E. community, to describe several different things:
1) abnormal level of fatigue immediately following exercise or activity,
2) abnormally delayed recovery,
3) delayed-onset "crash" or worsening of symptoms (i.e. initially appearing to cope with the activity but then crashing anything from several hours to a few days later).
The last is the most distinctive type of PEM, but I don't know if everyone with ME experiences it.