Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
In one sense I don't give a rat's monkey's uncle's about how they choose to analyse the data.
As long as they release the full raw data set in the near future so that others can independently analyse it.
So by now there should be thousands more recovery stories to boast about, didn't I read that Chader (do I have the name right) claimed efficacy of up to 40%.
and their recomendations have been accepted by NICE
You know what, stuff the original study, the authors say 30% recovered, that's one in three who entered the study, and their recomendations have been accepted by NICE, am I right?
Thanks Esther,Homoeopaths can come up with lists of people swearing that they've been cured by their treatments. I'm sure White, Wessely and Chalder could too.
Strange that the adoption of a biopsychosocial approach to managing CFS in the UK does not seem to have led to a steep decline in rates of CFS though: the primary impact seems to have been a steep increase in patient anger.
In a paper Esther Crawley was the corresponding author on, it was claimed PACE showed a 30-40% recovery rate for CBT/GET.
I got the impression that NICE weren't so impressed by PACE. They said they were waiting for the results for PACE, then when they got them they didn't drop pacing from their recommended responses to CFS. Who knows though? There's a new review due next year.
Yes, NICE accepted the PACE Trial's evidence, as supporting the NICE guidelines. But it seems that this was based on CBT and GET being found to be 'moderately effective'. At least, this is the only result that NICE cited in its recent mini-review of the guidelines, as far as I could see. 'Moderately effective', is not impressive, and even the PACE Trial paper itself acknowledges this, and actually says that other, more effective, treatments need to be found.
what we actually want to be made clear is how many people were returned to their pre-illness state.
But they don't want to tell us. Trying to unpick their manipulation of the data is the only way we have of explaining the problems that there are with their claims. It shouldn't have to be this way, but it is.
Maybe, as I said I think before, any 'advocacy' should be aimed at drawing on the 'benefits' of CBT and GET. Along the lines of 'If 30% have recovered, then gimme some of that. NOW!'. Make them qualify the headlines. Make them say exactly what they mean. If it were a drug then I'd be flattened in the stampede!
Beyond time when they should be made to 'put up or shut up' I would argue. Money where their extremely large mouths are. Except we already know that even the ones who reportedly felt better did not return to work, or come off of any associated benefits - right? I mean that was all in the figures that have been released, right? And these people were receiving psychological help - so it it were a 'simple' matter of persuading folk that they could work - they would be working, right?
...
GET is different. GET applies in other neurological (for example) conditions on a very similar model. Physiotherapy applies GET quite widely, and similar;y, physiotherapists, have to address and overcome concerns from patients not feeling they can do what is asked of them - even in a supported fashion.
...
What to do with long term conditions? Is a much wider question, but one that is I think relevant here. What to do when 'medicine' has done all it can? Flippantly, you hand the patient over to those better able (due to them having the time and training), namely psychologists and occupational health etc.
But the whole - 'ongoing care' - falls down flat, if those involved begin to think that they can 'cure'. Our problem is rather unique I would argue. And it's not wholly something we can 'blame' on those who claim success in treatment. Without a defined aetiology, without knowing a disease process or whether or not any physical process can be reversed - we are limited by how much we can say about the treatments outlined in the PACE trial; but then so are they. They are limited by the data and what they can claim about it.
Also... if GET isn't curative, then it ends in pacing.
re 3rd bit: I think that this should be best understood in moral and political terms, and I think that the priority should be ensuring that those with long-term health problems are able to decide for themselves what their priorities for the resources available to them should be. I really don't think it's right to assume that psychologists and occupational health workers have any role in providing 'care' to those with long term health problems. They may do, but that depends person to person, and medicalising these aspects of peoples lives can do harm as well as good. Although unrealistic to expect this, it's quite possible that those with health problems would rather have the money such services cost to do with as they want - this could be used for ready meals, days out, or anything else that they decide would be best. I think that there's something unpleasant about our tendency to prioritise resources towards providing 'experts' to 'care' for the sick, rather than providing those with health problems with the resources which would allow them to get on with their own lives as they see best.
"...what message -- and they also said at that conference - emphatically - this an organic - what's that word mean? - incurable - neurological disease - OK - now - it may be right - it may be wrong - but what message does this give our patients - now - here is the latest edition you've seen outside - of ME Essential - there are two levels to understand this picture - ONE - brave attempt of a woman to cope with a severe disabling incurable disease - OK - trying to lead a normal life in spite of being ill - but what message does that give our patients when we say to them - you have incurable - neurological - disease - is it more useful - a message for our patient - to say that -- or to say - Graded Exercise Therapy is a safe and effective treatment if it's done properly - because the two statements cannot be - this moment - joined together .."
The information you have requested is not held. The requested datarelating to the recovery rates and positive outcomes do not exist. That isto say that such analyses have not been done and there is no intention todo so. The reason for this is that the analysis strategy has changed fromthe original protocol as described below.
A group of researchers who held a meeting at the RSM in 1978. One can watch Peter White referring to it in a video of his 2008 talk at: http://www.rsm.ac.uk/academ/video.php (around 26:00-27:00).Who said ME was 'an incurable neurological disease', Dolphin? Sorry. Saw all this on the MEA FB page. Got lost.
"...or to say - Graded Exercise Therapy is a safe and effective treatment if it's done properly - because the two statements cannot be - this moment - joined together .."
Yeah - that's what I'd guess too. Maybe they realised that having papers defining 'recovery' in a way that overlapped with their own definition for "severe and disabling fatigue" was too transparently absurd.It really depends if they use CFQ also. If they do, I think the SF-36 PF threshold would be easier again. I'm wondering whether not satisfying both of the entry criteria is what they are counting?