by Christine Hunter Alison became suddenly ill in 1986 with a high fever, brutal headache and a disturbing myriad of other symptoms. We had no conception of what lay ahead. As the weeks and months …
An article published today in the journal ‘Fatigue: Biomedicine, Health & Behaviour’ concludes: “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”
‘Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial’
Published online 14 December 2016.
FULL ARTICLE –
ABSTRACT – http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724
FIGURES & DATA – http://www.tandfonline.com/doi/figure/10.1080/21641846.2017.1259724
BACKGROUND: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol.
PURPOSE: To evaluate whether these recovery claims…
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Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response…
Source: Spreading the Word
by Sasha Nimmo
In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care.
West Australian Alem Matthees was one of many people who wanted a closer look at the information from the study.
In March 2014, he filed a UK Freedom of Information Act request for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees’ favour that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in…
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Since the recent release of the Institue of Medicine’s report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called “ME/CFS” and not ME, and therefore doesn’t apply to ME at all (if you’re confused about the distinct differences between ME and CFS, please read this post). These people tend to see the report as a good thing. Others see the report as further muddying the waters and creating yet another diagnosis where people with varying diagnoses will be thrown together inappropriately. Even the committee members themselves, who claim to have unanimously approved the report’s contents, give varying answers on whether the report concerns ME patients or not. And while some (not all) of these committee…
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Some advice for nurses.
Also useful for carers, friends and visitors to help them understand.
The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have taken hours of their own personal time to educate themselves on true ME and how to meet my needs in the best possible manner. Still, it has been a learning process, for all of us. Even I wasn’t entirely sure what to tell them at the start – after all, I’d never had this level of care before. It would take us some time to figure out what works best for me. That said, we pretty much have it down now, so I thought I’d share some of what we’ve learned. Hopefully reading this will…
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