I think that's the nub of it. I agree re case definition and think that's something that has to be sorted before the project progresses and is the area most likley to be affected by the lopsided selection of mecfs experts in MEGA.
But overall, this is worth it for me, primarirly because I think the biomded work on the huge sample (as well as the huge sample itself) is just what's needed to make major inroads into understading this illness, including subgroups. .......)
But I understand that others don't think the trade off is worth it.
If sufficient numbers of properly defined ME & PWsevereME are included i agree that i think the trade off
could be worth it, but without them it wont be
able to
actually subgroup...... But it will
SAY it
has done.
In the same way that PACE purported to study 'pacing' despite APT being nothing like any pacing that patients use.
It will be a study that is touted to be the 'be all & end all' - such a huge study done by 'eminent' researchers will be held up as the last word in the uk. So imagine the fight we'll have if it includes no severe sufferers & then shows very little biomedically wrong!
I am very worried that these wonderful researchers will just accept the so called 'experts' telling them that the NHS clinics cover all the bases, how could they be expected to know otherwise. And we'll have a study that everyone(including those researchers)
thinks is about us, but isnt. I dont know whether to weep or scream.