- Messages
- 66
Dear All,
Hello! This is my very first post although I have long been a reader of the many excellent posts on this site and a quiet supporter of the superb advocacy. As someone who has been sick with ME for almost 6 years and lost reliable speech and the ability to function in life without impact and deterioration, I so appreciate everything that has been done and said to correct the misleading misrepresentation of ME, although I have tried to advocate and inform on an individual basis whenever possible.
There is so much hope and encouraging advocacy and research happening now which is why, in the wake of the PACE trial outcome, I am seriously concerned by the MEGA trial and it's aims, objectives and associates. I agree with many of the objections made and think a counter petition is an excellent idea. My suggestions for the wording is as follows:
THE MEGA TRIAL - NOT IN OUR NAME - we, the undersigned cannot give our support to the MEGA trial until it's objectives are made transparently clear and those associated with it do not include any investigators or advisors associated, affiliated or linked to PACE and/or any associated BPS, CBT, GET trials which have been shown to misrepresent our illness and not be in our best interests. We support organic bio-medical research which respects and considers the full range of signs and symptoms experienced by those who suffer all levels of the fluctuating illness known as ME.
I hope this helps - it's taken me a while to write and was going to include some background info but thought I'd save that for another time, not least because my vintage pc is typing on this page slower than me!
With kind regards to all.
Hello! This is my very first post although I have long been a reader of the many excellent posts on this site and a quiet supporter of the superb advocacy. As someone who has been sick with ME for almost 6 years and lost reliable speech and the ability to function in life without impact and deterioration, I so appreciate everything that has been done and said to correct the misleading misrepresentation of ME, although I have tried to advocate and inform on an individual basis whenever possible.
There is so much hope and encouraging advocacy and research happening now which is why, in the wake of the PACE trial outcome, I am seriously concerned by the MEGA trial and it's aims, objectives and associates. I agree with many of the objections made and think a counter petition is an excellent idea. My suggestions for the wording is as follows:
THE MEGA TRIAL - NOT IN OUR NAME - we, the undersigned cannot give our support to the MEGA trial until it's objectives are made transparently clear and those associated with it do not include any investigators or advisors associated, affiliated or linked to PACE and/or any associated BPS, CBT, GET trials which have been shown to misrepresent our illness and not be in our best interests. We support organic bio-medical research which respects and considers the full range of signs and symptoms experienced by those who suffer all levels of the fluctuating illness known as ME.
I hope this helps - it's taken me a while to write and was going to include some background info but thought I'd save that for another time, not least because my vintage pc is typing on this page slower than me!
With kind regards to all.