Many thanks for your swift response to my previous email regarding the MEGA study and for passing our concerns on to those who are preparing the bid for funding…
It is heartening to hear from your email that the inclusion of very severe patients is under discussion by the MEGA team. I notice, however, that you mention ‘financial limitations’ in this context. The reaction of other patients with whom I have shared this issue echoes my own: that severely affected patients should be the priority. People with ME/CFS in general are offered little in the way of treatment but most of the severely affected are abandoned entirely by doctors. They are left to lie in darkened rooms, often unable even to sit up in bed or converse with their loved ones, and without any prospect of medical intervention. I’m sure you know all this. Though I cannot claim to have taken a scientific sample of opinion, the overwhelming impression I get from patients is that if there are financial constraints regarding MEGA then these should apply to the overall number of samples taken rather than be focussed on the severely affected, who are the ones most in need of help. I am reminded of Prof Ron Davis’ observation that data from severely affected patients is the most important ‘because their biology would show the greatest differences compared with healthy controls’. It seems incongruous to be envisaging such an enormous study yet even at this stage, while the grant submission is still being prepared, to be talking about insufficient money for full inclusion in the study of those most in need of help.
A further issue regarding patient selection occurred to me while reading through the ‘questions and answers’ update on the MEGA petition website:
The update says: “The only way to do this is to recruit patients through NHS clinics throughout England.”
As I described in my previous email, taking patients from the clinics alone would produce a sample of patients biased towards the less severely affected. Continue reading “More on MEGA”