@JaimeS as a follow up to my post yesterday, I suppose the real problem is the lack of patient trust arising from PACE, not anything that is intrinsic to the MEGA study itself.
MEGA plan on selecting patients based on the NICE NHS criteria, and all need to have PEM, which will be defined in agreement with the Patient Advisory Group and are also going to assess patients for meeting other research criteria such as Fukuda,CCC,ICC, which sounds very good as regards making sure that it is really M.E. sufferers whose data is analysed and establishing different subtypes. They also say they will consider using the DePaul Symptom Questionnaire designed by Dr. Jason.
If a concern of patients regarding MEGA is that it will inappropriately introduce psychological explanations , I don't think this is likely as M.E. patients with secondary depression will be diagnosed as such and presumably any biological markers of depression isolated from biological markers of M.E. In this regard it is actually not really clear to me why M.E. sufferers tend to have confidence in the Naviaux study on Metabolic features of CFS for example, and yet reject MEGA which could do much more than this. Naviaux's reference in the conclusion of his paper to depression and ptsd being "related medical disorders" to CFS, and his expanded CFS metabolomics study asking questions about childhood trauma don't seem to attract criticism at all, versus Professor Crawley's acknowledgement that we don't yet fully know what is going on in M.E.( e.g. in her New Scientist article last November she says "Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological" and "Even more strange is the argument that because clinicians currently use behavioural approaches to treat it, we must secretly think it is psychological." Also sometimes there does seem to be a bit of misrepresentation of what Professor Crawley says going on online or taking things ou.t of context, not that I agree with everything she says, but I think it is unrealistic to expect that a mixed group of patients who probably have different subgroups of illness all should agree with everything an individual researcher says about their illness, when it is still so poorly understood in general.
Anyway between the number of high calibre researchers involved, the patient advisory group, patient scrutiny, the fact that they plan on having an external agency help with the data analysis and the fact that their findings would have to be replicated in other studies I can't see that there will be any real scope for unethical or unscientific behaviour.