((Please note that I am not involved in organising the OMEGA petition.))
It’s taken me a while to sign up to the OMEGA petition because I’ve really wanted to find a way for the MEGA ‘biomedical research’ study to work.
Steps could be taken to improve the original proposal. As suggested in the previous post, the patient sample could be obtained not from the NHS clinics but from the existing UK Biobank. There are nowhere near enough samples in the Biobank at present but there is already funding for more, and more samples still could be added as further funding is obtained. Using the already established methodology, with patients coming through GPs, this could produce a reliable sample with the focus on PEM. There would be plenty of severe and moderate patients and – if my rudimentary understanding of ‘big data’ is correct – the sample need not be as large as the one from the clinics as patients with other fatigue conditions would not be included.
If Dr Charles Shepherd – or someone appointed by him – could be in charge of this then I am sure that the majority of the patient community would get behind the project. But would such a switch be achievable? That is the problem. The word is that Prof Esther Crawley is in charge of patient selection – and is unlikely to want to change the way it is done.
The involvement of Prof Crawley, of course, has been one of the main reasons why patients have been uneasy about MEGA right from its first announcement. Yesterday’s publicity about FITNET, Crawley’s upcoming online CBT study, has come as a timely reminder of why that is.
Yesterday’s reports were brimming over with misinformation. Continue reading “Why We All Need To Sign The OMEGA Petition”