Thursday, 29 September 2016

Nothing to see here, sorry to spoil the party

The PACE recovery data has been released and analysed - the results are not pretty, confirming what ME patients, their charities and advocates, and informed doctors have been saying all along: PACE is seriously flawed. It is not news that it's flawed, it has always been flawed, but the trial was spun and spun and spun to be the best thing since sliced bread, thanks, mainly to the UK Science Media Centre. I am too weary to write more, but here is David Tuller hosted by virologist Professor Vincent Racaniello. And Julie Rehmeyer, a science writer in USA, in STAT. Sir Simon, unsurprisingly, is still defending PACE, it is risible (he says he is 'sorry to spoil the party'. Such respect for a patient community jubilant that his colleagues' nonsense is exposed for the circus it is). He also has said, according to Julie's article, Nothing to see here, move along. Well, there is plenty to see. Plenty.

News of the debunked trial has been widely disseminated in USA, so far only one UK journalist has taken the bull by the horns, the headline is excellent: Exercise and therapy cure for ME is ‘seriously flawed’, but we have, of course, Peter White, the lead co-principle investigator still defending PACE - and he has enrolled his friend George the homeopath to help. The PACE gang are simply running out of people to speak up for them. The article, also, does not scrutinise the harms of GET, nor the appalling smearing and misrepresentation of patients along the way, but it's a start. The ME community is owed too many apologies by too many journalists, who simply didn't listen. And I will never understand those doctors who have spread and continue to spread misinformation - based solely on their own fragile beliefs.

*Update: Peter White  now has his swansong in the Guardian. Peter has turned into Jesus, and is now very concerned about the wellbeing of ME sufferers. He's not as smooth as Wessely (who loves the limelight) in his media outings - I have never seen such an unctuous, disingenuous piece. The comments are excellent, a real education for those who wish to know why  the science of PACE has failed so horribly. My own comment here.

The mainstream press in UK are still not picking up the story, though independent journalist Jerome Burne has written about the whole debacle here. 

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