This email has been sent to Professor Holgate of MEGA. Many thanks to all those who signed. (Whoops! missed a few… Total signatures now updated to 221)
((Please note that we are not the organisers of the OMEGA petition.))
Dear Professor Holgate – We comprise a number of M.E. patients and carers, 218 in all. Please see our signatures at the end of this email..
We are writing because we notice your suggestion in your letter to Professor Jonathan Edwards that OMEGA (the petition opposing the MEGA study) has attracted so many signatures due to the support of Invest In ME. We are writing to assure you that we patients and carers are able to look at the evidence and make up our own minds on such issues.
Here are some of the grave concerns that we have about the MEGA study as it has been proposed. It seems likely that you have heard many of them before but in view of your professed perplexity about the OMEGA petition, we want to make sure you are aware of the issues. For the same reason, we are copying this to the other members of the MEGA team and to those you copied in to your letter to Professor Edwards. We are also sending a copy to Professor Edwards himself, and the email will be posted online at the Spoonseeker blog.
Our concerns about MEGA include the following:
Patients from the NHS CFS/ME clinics (apparently the intended source for MEGA) will not yield a representative sample of people with M.E. The reasons for this include:
- Most severely affected patients cannot access the clinics and so will not be included in the study.
- There will be an inevitable selection bias towards the mildly affected because
- the clinics will tend to select such patients as those most likely to respond to the behavioural therapies on offer, and
- the more severely affected patients will be more likely to reject such therapies – and hence the clinics – as inappropriate.
- Other more severely affected patients will no longer be on the clinic’s system
- either because they have not responded well to the therapies, dropped out, and not been followed up (as feedback suggests is often the case) or
- they are among the long term sick who are no longer on the system because treatment is time-restricted
There has been a suggestion, following representations from patients, Continue reading “The OMEGA Petition – Email to Professor Holgate”