More dodgy ME/CFS research…

In the Telegraph:-

“The biggest study yet into possible ways to reduce the symptoms of Chronic Fatigue Syndrome – the little-understood condition that affects 250,000 people in Britain – claims…   …that Cognitive Behaviour Therapy (CBT), in which patients discuss their fear and avoidance of physical activity, combined with Graded Exercise Therapy (GET), which helps sufferers gradually increase the amount of activity such as walking they can manage, is more effective and less harmful than previously thought.”

.

Or, quite possibly, not. And am I alone in feeling that “less harmful” is a long way from being a ringing endorsement?

As I’ve said many time before, a research population of under 1,000 people will yield statistically worthless results. This research used 640 people, and the claims made for it have little more validity than your average TV shampoo advert, which claims 98% customer satisfaction (before revealing, in tiny text at the bottom of the screen, that they ask 12 people – or an equally fatuous number.

In this instance, it would be useful to know how many of the 640 were in the test group, and how many in the control group, because if the 640 is the total number – test plus control groups – the results are even more questionable. And, of course, the Placebo Effect must be taken into account. I doubt it has, though.

I have had ME/CFS since 1985. Sometimes it responds positively to gentle exercise, other times exactly the same exercise will wipe me out with excruciating pain for days afterwards. A person’s experience of ME can fluctuate widely from day to day, even from hour to hour (I can feel well enough to go out, so get ready then, out of the blue, be totally trashed by devastating nausea and exhaustion), and it’s quite possible that some (many?), of the 640, would react differently if retested.

The claims of this research are worthless, as the test population is too small, and GET, as far as I and many other sufferers are concerned, remains dangerous.

CBT is a crock – talking will not cure a physical illness, like ME/CFS, any more than it will cure a broken leg. Coping strategies might help, but they are not a cure.

And isn’t it fortuitous that this research – such as it is – pops up just as Incapacity Benefit claimants, many with ME/CFS are making the transition to ESA?

You have ME? No problem, here’s a course of GET, and some CBT. Now go and sign on for JSA – you’ll be fit for work in no time!

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10 thoughts on “More dodgy ME/CFS research…

  1. this “study” has given me the best chuckle in a while.

    So how do we get to the CBT therapist (thats if there is one due to cuts), get to the swimming etc to exercise without DLA as you are too pooped to fill in a form?

    CBT seems to be the answer to everything, it will probably assist in dealing with the depression issues caused by any illness and help come to terms with changes in your life, but its like telling a fatty to stop eating fatty foods as its bad for you (I know the why but can i stop it, no).

    Telling someone to feel better is a bit different to the usual rubbished alternative therapies – which of course are not state funded due to the prominence of the medical model – even though ive felt a darn sight better after a massage than i do after taking pain killers.

    its in The lancet it must be true just like the MMR/Autism link article that was removed by The lancet….

    yes exercise and talking is good, but for everyone its not a cure for all disease/ailments but part of a holistic package. Unfortunately we know that DWP will just say ok you dont go for CBT then you must not be ill.

    • Just once in my life I managed to get a social worker (not entirely sure how, to be honest). Didn’t actually do me any good, but the guy has just qualified as a CBT therapist, and he showed me a copy of his thesis, of which he was extremely proud. Well, OK, it did represent a lot of work on his part, but it was the most amazing garbage I’ve ever read – psycho-babble from beginning to end.

      I don’t doubt that the test group did, on the whole, feel better – why wouldn’t they since, probably for the first time since they developed ME, somebody was taking them seriously? At best it’s the Placebo Effect, which is a very potent force, and not to be sniffed at, but it’s still not a cure.

      They were supposed to be recruiting legions of CBT therapists, and physios for GET, but there was never any money for it, and there sure as hell won’t be now.

    • Ah, if only these people would employ me, they wouldn’t look so foolish! Bottom line, though, no matter how well-designed it might be, with too few test subjects it’s a waste of time and money. Just wait, though – the results will be carved in stone soon! Thanks for the link – I’ll check it out.

      I have a theory – which I’ve covered in other posts – that the fact that ME/CFS has no hard diagnostic criteria is a major problem when it comes to research, as well as the dodgier “therapies”, like GET and CBT. With the best will in the world, a diagnosis of ME/CFS is just a best guess based on medical history and symptoms, and guesses can be wrong. It’s inevitable that there will be both false positive and false negative diagnoses, and it’s the false positives – people diagnosed with ME/CFS but who have something entirely different – who are, I believe, responsible for slanting research results in the direction of a favourable outcome, and also for providing the “cures” that we see for dubious “therapies”.

      By the way, after having been “cured” twice previously, the last time by the Lightning Process (https://ronsrants.wordpress.com/2008/06/28/the-lightning-process/ ), which her mother exhorted pretty much everyone to try as it was so wonderful, she’s now been “cured” again. This time she has coeliac disease. Stick around folks – there’ll be another cure along shortly! See http://www.dailymail.co.uk/health/article-1356316/At-I-discovered-secret-Emilys-14-lost-years-Esther-Rantzen.html#

      Yep, not doing too badly, thanks Pamela, though I was a whole lot sicker than I thought I was (I lost almost 2 stone in a matter of days, though I’ve since put one back). I’m getting there slowly, though, especially as the consultant prescribed decent pain meds, at a dose that actually works!

      Not going to get back to where I was – there’s too much damage – but I’m pretty sure, given time, I can certainly be better than I am right now which, in itself, is a whole lot better than I was, say, two weeks ago. Still baby steps, though . . .

      Ron.

      • Nice to see some sane, well-argued comments on that NHS link (see Pamela’s comment), instead of the all too common fruitcakes and trolls.

        Ron.

  2. My thesis says that disabled people in the UK are “the new Jews”. The parallels are uncanny. See my blog : http://wp.me/p1knur-4

    Do we really WANT to end up at ATOSchwitz? Do we have any choice? This is truly the “Government of all the cynics”.

  3. I feel special , CBT has failed to make any impact on either my M.E or depression! needless to say I have been offered very little else in the way of treatment for either and am developing an almost irrational response of ‘arrrgggg!” whenever CBT is marketed as a miracle cure for either condtition.

    I also quit a study for GET a few years ago ( it was the only treatment offered for ME/CFS in my area at the time and afaik it still is) as it made me relapse very badly, and guess what? I found out those folks who ‘don’t complete’ the study were not counted in the final results hence why the treatment had a very high sucess rate.

    I wonder if similar things may have happened here?

    I’ve also had to put up with so much shit from people doing CBT/GET/Whatevers (for both depression and M.E, thus disproving my theroy that mental health professionals were just especially asshole-ish to peple with M.E as they didn’t belive it was pyshical, I now think a lot of them are just asshole-ish to everybody!) on my ‘attitude’, ie I question things and am not ‘complying with the treatment enough’. I’m curious about these things, I have a right to question treatment I’m undergoing and raise any concerns I may have about if I don’t feel I am benefitting. I resent to be made to feel that a failure of treatment is my fault for ‘not complying’ with treatment, when my depression or M.E does not fit into a little box of ‘symptoms’ they have on the little sheets etc.

    • A few years ago, I was referred to physio for a knee injury. Before my first appointment I faxed a letter pointing out that I had severe ME and that there were many things, when it came to exercise, that I simply couldn’t do. I got a letter back from the senior physio, saying she was very experienced with ME and we shouldn’t have a problem.

      That didn’t stop her trying to work a GET routine in with the list of knee exercises she gave me to do at home, though. I wrote, pointing out – far more politely than she deserved – exactly how improper that was, and dangerous, as most of the exercises were way beyond what I was capable of, and by the way, how did she expect to get away with it? Never got a reply. Never got a second appointment, either, and I still have the knee injury (torn lateral collateral ligament, plus damage to the quadriceps where it attaches to the patella).

      Oh, and if my recent spell in hospital is at all typical, medical care sucks across the board these days.

      Ron.

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