Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
A tribunal has ruled that data from a controversial £5m treatment trial into Chronic Fatigue Syndrome (CFS), also known as ME, must be released.
I received this on Twitter, which may put the matter into perspective:
A tribunal has ruled that data from a controversial £5m treatment trial into Chronic Fatigue Syndrome (CFS) must be released, rejecting an appeal from the university that had carried out the study.
Queen Mary University of London (QMUL) spent £200,000 on legal fees to appeal the Information Commissioner’s decision that it should release anonymised data from the trial, called PACE, whose results were published in 2011.
The trial compared adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for CFS, also known as ME, in 641 patients in England and Scotland.
Its conclusion was that cognitive behaviour therapy and graded exercise therapy moderately improved outcomes if added to specialist medical care but adaptive pacing therapy did not.
The findings proved controversial as it conflicted with what many sufferers believe—that adaptive pacing therapy helps, but cognitive behaviour therapy and graded exercise therapy may lead to deterioration.
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It also doesn’t address the fact that CFS patients may have undiagnosed causes for their CFS. Some disorders, especially if rare, may take several years to be diagnosed. Until the root cause, such as joint hypermobility syndrome, is found out in these patients, little progress will be made. It is difficult to get past the CFS label and get further tests and treatment. How did this unknown affect the results?
I see no reason why a University would not readily release data such as this unless a gagging order was imposed on their research remit by a government intent on only using selected data to further it’s cause. If that’s the case, this university would be culpable in collusion to manipulate data for the reason of financial gain, a very serious situation for it’s Dean, and future trust.
Publicly funded research should always be released publicly. BTW, what is adaptive pacing therapy ?
It still doesn’t take in to account that medical knowledge is not advanced and we do not learn anything from trials other than a. Seems to be better than b. That was how homeopathy got a hospital until the trials were repeated. There is no such des ease as ME it is a syndrome that could have the same symptoms with completely different cause an any 2 people. I knew a girl who eventually found out there was a fungus found in parrot cages growing in her sinus cavity and she had never had a parrot. Many viruses cause chronic fatigue, many medicines cause it so it is not appropriate that a completely ignorant decision maker at the DWP should be making arbitrary selections on a ramp at the Jobcentre.
I have CFS/ME and Fibro, as two of my health problems and, when it was still possible for me to get out of the house, I was ‘recommended’ to take part in a mixed PACE-type exercise, as I was told this would definitely improve my health.
So I took part, for months, pushing through my pain and fatigue so often that, eventually, I collapsed, then spent many, many, months trying to get back to any sort of health level than the zero it left me in. I’ve since met more sufferers than I thought possible, online, and all over the world, who were forced to go through the same kind of treatment as I – mostly to their detriment.
I could have had many more years of being able to walk further than to my bathroom (10 feet away), before I got to this stage, if I hadn’t been almost forced into doing the exercises, against my better judgement.
Unfortunately, as I’ve found out over the years since, I also have a host of other health problems, that were not taken into consideration when the exercises took place, just as Jane points out above, and this exacerbated everything else wrong with me.
This then led to my collapse, and becoming house-and bed-bound!
I blame the US Health Insurance firm, UNUM, and the US, and UK, governments, for pushing these so-called treatments, when they knew full well there were as many symptoms to the Syndromes being suffered, as people suffering with them, so that these options given would suit practically no-one, as Jonno Raab points out above.
From what I remember reading about it at the time, (and, please, forgive me if I misremember it all, as my memory is pants nowadays!), most of the PACE-style treatments were recommended by UNUM, which was still being sued by many of it’s US customers at the time, for refusing to pay out for alternative treatments to the one they recommended.
As I remember it, UNUM used some loophole in their contracts that, if any health problem was seen to be a mental health problem, then they wouldn’t have to pay out on the insurances taken, for alternative physical treatments – and so they used their influences with the US government, to having CFS/ME classed as a psychological problem, rather than the physical, and auto-immune, problem it actually is which, of course, saved them a fortune in payouts, and which policies they brought over to the UK.
While all of this was happening, UNUM were also advising the UK government on it’s welfare policies – and we all know where that has led us! :(