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Who is he speaking for(?) " A statement to Newsbeat from some of the country's leading ME researchers and clinicians* says: "These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life." It goes on to say that using GET "is...

Found this FOI from 2012: requests info on recovery rates. part of reply: " The information you have requested is not held. The requested data relating to the recovery rates and positive outcomes do not exist. That is to say that such analyses have not been done and there is no intention to do...

Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome Author links open overlay panelDominicDougallaAnthonyJohnsonbKimberleyGoldsmithcMichaelSharpedBrianAnguseTrudieChalderfPeterWhiteg...

Very early the other morning I was hearing a sharp intermittent beep; it stopped and just as I was going back to sleep it started again.............damn battery in my smoke alarm.

and also contradicts some of the things Simon Wessely tweeted

I thought this bit interesting: "A NICE spokesman said: "We do recognise the controversy about the currently-recommended treatments and will discuss with the expert committee, once appointed, before deciding on any action prior to the completion of the new guideline." So they will at least look...

didn't Carol Monaghan quote from one participant of the PACE trial (re harms)? eta: " One participant in the original trial said: “After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about...

The OHC say something similar in their own research: "The study found significant improvements in participants belief they could change their situation and the symptom of sleep after only 8 weeks." http://www.theoptimumhealthclinic.com/research-overview/publications/ so how do you measure belief?

That's not what I'm saying. Maybe a better way to put it is: If CBT is to be offered to ME/CFS patients, it should not be the version as used in the PACE trial with deconditioning as its model. It should be a version based on current evidence and patient experience. (I've only looked at...

Only if this CFS PACE version of CBT is shown for what it really is, and removed as a 'treatment' for ME/CFS. (What actual treatment or help for ME/CFS patients is subsequently decided upon is another matter but I agree with what @Trish said on the issue).

neither; genuine misunderstanding. This is the problem generally with using the term CBT. This seems to have gone full circle.......back to first post.

precisely. ?? beginners as in newly diagnosed......encouraged to gradually increase their activity? If the CFS/PACE style CBT stays then, as one example, Crawleys FITNET will be justified.

From FB: "Luke Pollard Yesterday at 03:29 · Hello #Plymouth - yesterday I spoke in the debate on Myalgic encephalomyelitis (ME), in Westminster Hall. First of all, I want to thank each and every one of you that sent me your experiences on ME ahead of the debate - we received countless emails...

Back to Sharpe.....

Article on on #MEAction website " “Stakeholders and biobank experts generally agree that it is feasible to establish a biobank and/or patient database in Australia and that these options had potential to advance ME/CFS research and could attract new researchers to the field. However, in a 2017...

https://www.bmj.com/content/324/7328/7.1/rapid-responses " In 1992 Dr Anthony Pelosi , then Consultant Psychiatrist at the Lanarkshire Health Board, Hamilton + East Kilbridge Unit, Glasgow, a longstanding friend and collaborator of Professor Simon Wessely and Dr Peter White, said in a personal...

yes, exactly but should be a separate issue (ie a separate illness to be treated). This CFS, PACE version of CBT, is very much based on the deconditioning theory (as is GET) and even if you remove the use of GET as a treatment, it can be used to promote the same potentially harmful 'ignoring...

thanks for trying.

Understandably GET is being highlighted as being generally detrimental as a treatment for ME/CFS. But the message on the version of CBT as used in the PACE trial being almost as bad and harmful does not appear to be getting through. @Emsho s testimony at the Scottish Parliament about the CBT...