CMRC Conference reports: Patient session, Immunology, MRC studies updates+

Esther12

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PACE: A trial & tribulations
Prof Peter White, Barts and the London School of Medicine and Dentistry


Prof White gave us what he termed the ‘good news’ and the ‘bad news’ regarding to PACE trial. He started with an overview of the trial, which investigated using graded exercise therapy (GET), cognitive behaviour therapy (CBT), and adaptive pacing therapy (APT), all added to specialist medical care (SMC), and SMC alone, showing the results in terms of fatigue, cost effectiveness and serious adverse reactions.

“Both CBT and GET were moderately effective, cost-effective, and safe if delivered individually by appropriately qualified therapists who are properly trained and supervised,” he said. APT was no more effective than SMC alone.

Prof White continued by outlining the reactions to the PACE trial from some M.E. patient activists and organisations, which have to date included formal complaints (none upheld), petitions, and a total of 168 Freedom of Information (FOI) Act individual data requests (he had to count them all because he received an FOI Act request asking for the number.)

“Criticism is fine, whereas vexatious complaints and harassment are not,” he said. “There are three reasons why this is important for the field.

“Firstly, it’s not just the PACE trial that has had these problems – the scientists who wrote the first paper that failed to replicate XMRV findings encountered something similar. It happens whenever researchers find something that isn’t popular.

“Secondly, it’s important because we are trying to encourage young scientists into the field, and we need to protect them and stop this happening to them.

“Thirdly, it’s important because it damages science. We have some reasonable evidence that the campaign against the PACE trial affected our recruitment. We had to apply for an extension from the MRC in order to finish the trial.

“The PACE trial has also played a small role in helping to amend the FOI Act for the better. From 1 October, current research will be exempt from the FOI Act so long as it can be shown that release of that data will be prejudicial to the conduct of the research.

“I think it’s really important that we don’t just stay biological, or indeed behavioural, but integrate them, as you can see from this slide [CBT normalises cortisol response to wakening in CFS]: a so-called psychological treatment has changed the physiology for the better.

“Perhaps most importantly, we need to stop being dualistic; believing that illnesses are either biological or psychological. They are both; a psychological event cannot happen without a biological event. In the future I hope that neurological and mental health conditions can be classified together as conditions of the nervous system.”
Ugh. Really wish he'd tried to pull this in front of an audience of patients. Anyone know if he get any questioning? Ta Simon.
 

Esther12

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One person said that PDW gave an example. I'm still interested in knowing more. My guess is that it could be an atypical example of somebody who did well, but I could be wrong.
Yeah - would be nice to get a transcript rather than summary.
 

Esther12

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Perceptions of the condition

“Does the panel think that a different perception of ME and CFS would actually help improve the availability of funding?’ asked a UK film producer working on a film about CFS/ME, Canary in a Coal Mine.


“From the children’s perspective,” said Dr Crawley, “they would say they really need a different public perception to enable them to go back to school, to enable them to talk to their friends, even just to enable them to talk to their siblings. This is a very stigmatising illness, particularly for children and we should take every opportunity to talk about how devastating the illness is.”


Dr Crawley felt taking a drip, drip, drip approach was necessary to change the public perception of CFS/ME, and that events such as this patient-researcher session and working together were really important to achieve this.
Would be nice if someone had pointed out the harm Crawley had done to perception of the condition and patients.
 

Bob

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Valentijn

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It's finished. It lasted for about 10 minutes. Sound quality wasn't great. They approved a change to their terms of reference (or something similar - can't remember the exact terminology), and that was about it.
Thanks for the info. I tried to watch it, but the sound was too poor, and somewhat aggravated by all them for'n accents :D