Question to Dr Charles Shepherd of the ME Association
Originally via forums.phoenixrising.me "Petition: Opposing MEGA" and via email.
In regard to:
The OMEGA Petition – Email to Professor Holgate
Reply from Professor Holgate:
"I'd like @charles shepherd to comment on whether he thinks Prof Holgate fairly and fully addressed the issues raised, or whether his response exhibited the same bias and selectivity that has crippled UK ME thought for decades."
I'm asking because, a huge number of remarkably talented M.E patient advocates just signed a very clear vote of no confidence in Professor Esther Crawley. I've had a closer look at it and, well, wow: Look at all this!
"Unfortunately we have no confidence in any study involving Professor Crawley and certainly not one in which she is involved in this all-important role. [cohort selection]
"Professor Crawley seems unable to distinguish between M.E. and generic fatigue."
"Prof Crawley effectively selected children with generic fatigue yet called it CFS/ME"
"Professor Crawley is recruiting a group of patients with generic fatigue yet calling it CFS/ME."
"Professor Crawley further confusing the picture by selecting new definitions willy nilly for no obvious reason."
"she continues to defend the now discredited PACE trial"
"She continually refers to the Dutch FITNET trial having a 63% success rate even though its long term follow up showed no difference between the FITNET and control arms of the study;"
"Even more astounding is her continued defence of the PACE trial itself"
"yet Professor Crawley’s judgement seems to have been that one size of goal is as good as another."
"Perhaps most alarming is Professor Crawley’s intention to proceed with the Magenta Trial effectively a PACE trial for children, in spite of the debunking of PACE and the evidence from patients of severe and sometimes permanent deterioration as a result of GET."
[Quotes from : https://spoonseeker.com/2016/11/22/the-omega-petition-email-to-professor-holgate/]
And yet somehow Professor Holgate's response included this:
"As you will have noted I have brought the very best scientists from across the UK to assemble this application."
[Quote from: https://spoonseeker.com/2016/11/24/reply-from-professor-holgate/ ]
We cant seem to get through to PDW, the Lancet is currently going against the wishes of 12,000 of us, the CMRC is unable to say whether it supports the biggest bit of UK CFS research to date and Professor Esther Crawley appears to be going FULL STEAM AHEAD at a time that demands caution at the very least. After FITNET, MEGA and his response today, I do not think people with M.E can get through to Professor Holgate.
I want to know whether you are still with us Charles. I'm asking, quite simply, whether you think Professor Holgate responded adequately when 200+ M.E advocates told him very, very, clearly that they had no confidence in Professor Crawley?
Nov 24, 2016