Wednesday, 31 July 2013

The Infamous PACE Trial - Ignorance is No Excuse

So I can't be alone in my experiences of the NHS. Thankfully, other than the whole CFS/ME thing, I have always been very healthy and I've only been to A&E once and as a hospital outpatient once, both for fairly trivial things. And they have always been helpful.

It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.

They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.

Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.

Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.

Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!

And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.

CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.

I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.

It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.

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