Adam pwme
Senior Member (Voting Rights)
Transcript:
BBC Today Programme March 2019 (clip)
An Oxford professor has stopped his work on chronic fatigue syndrome also known as ME because he says he's faced a barrage of online abuse from patients and campaigners.
Some context… (slide)
Over 80 Charities are opposed to his treatments for ME, CBT and Graded Exercise Therapy (slide)
Dr Charles Shepherd
Medical Advisor ME Association
Unfortunately the main treatments that are recommended by the NHS are two treatments called Cognitive BehaviouralTherapy and Graded Exercise Therapy and there are problems with both of these treatments. We know that this is not a mental health condition it's not an illness that is perpetuated by psychological factors and we know from our own survey that graded exercise in actual fact makes over 50% of people with this illness worse.
Many severely deteriorate and never return to their previous levels of function. (slide)
ME Patient who received Graded Exercise Therapy at an ME Clinic
I had to walk and had to increase walking by 10% each week and as I began to get sicker and sicker I was told this is the moment where you push through and you get better. I started at the clinic being able to walk about four minutes each day and I ended and I needed a wheelchair. I went back to my physio and I went back to my doctor and they said congratulations we're so glad we helped you recover.
Michael Sharpe continues to claim these treatments are safe (slide)
Liz Mcinnes MP
Middleton and Heywood
I spoke in the debate last year about Meryn Crofts who is one of just two people in the UK who have had Myalgic Encephalomyelitis recorded as a cause of death. And Meryn’s mother was very critical of the pace guidance given by NICE and attributes the worsening of Meryn’s condition to it. She tells me that Meryn thought she could push through the condition and keep going although her family really wanted her to slow down and sadly it was only when the family contacted a private medical practitioner that Meryn was given the advice to slow down and told that she needed to rest. Meryn's mother feels very strongly that had Meryn been given that advice when her condition started she might not have gone on to develop severe ME and Meryn's mother said to me if the PACE Trial were a drug it would have been banned by now.
Over 100 well respected scientists don't trust the PACE Trial results or methodology. (slide)
Sir Edward Davey MP
Kingston and Surbiton
I have seen scientists writing in journals like this Journal of health Psychology calling out the PACE Trial. There is a huge amount of evidence Mr Rossendale from the science community, from very eminent people questioning the whole PACE Trials their methodology the evidence they used and the way they treated the patients.
Dr Phillip Whitford MP
Central Ayrshire
And as has been said Graded Exercise actually can make things much worse. This is based as has been said on the flawed PACE Trial published in The Lancet in 2011. It was an unblended study because you can't hide from people what treatment they're getting, that means all other aspects should have been very strict and yet CBT and GET were promoted to patients as the thing that was going to help them. They didn't analyse their planned outcomes which is critical in research. They lowered their defined targets simply because it was failing and used subjective rather than objective measures. Re-analysis of the PACE study has shown minimal benefit to these treatments and indeed as my honourable friend from Glasgow Northwest said some people got worse and were still classified as a success.
Over 30 MPs want an investigation into the PACE Trial (slide)
Carol Monaghan MP
Glasgow North West
I think when when the full details of the trial become known this will be put down as one of the biggest medical scandals of the 21st century.
The majority of patients have been asking legitimate questions (slide)
Previous claims of harrasment made by PACE authors were found to be “grossly exaggerated” in a court of law. (slide)
What about Michael Sharpe’s behaviour? (slide)
Carol Monaghan MP
Glasgow North West
Interestingly, Professor Sharpe one of the authors of the PACE Trial has emailed me this week he has told me that “my behavior is unbecoming of an MP”
Gavin Newlands MP
Paisley and Renfrewshire
I’d like to say to Professor Sharpe that its not my honourable friends conduct that's unbecoming but rather, it's yours. Sending emails like this do nothing whatever for the reputation of the scientific research community and you should apologize.
Dr Phillip Whitford MP
Central Ayrshire
The fact that the honourable lady has been written to by a scientist and has been called out I hope right honourable members from across this house will find shocking.
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