New attempt to avoid releasing data on 'recovery' from PACE

[Sean]

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.

 

[Holmsey]

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.

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?

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%.

So just tell us about those, just give us the figures for how many successes there are in total, forget the outset measures or arguments about statistics, just tell us about the what must be thousands who now talk about when they used to have ME or CFS but thanks to White and co they're now back working full time and engaging in the same sports they did before becoming ill.

5 million of tax payers money and all the tax payer gets is semantic arguments and statistically significant bulls**t.

 

[Esther12]

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.

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%.

In a paper Esther Crawley was the corresponding author on, it was claimed PACE showed a 30-40% recovery rate for CBT/GET.

and their recomendations have been accepted by NICE

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.

 

[Bob]

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?

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.

 

[Holmsey]

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.

Thanks Esther,

 

[Holmsey]

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.

And yet there's been no clarification or retraction of the widely publisized 30% recovery rates, I'd say 1 in 3 is an astounding success rate. From looking at the FOI response the next publication isn't going to say anything new, the FOI reply says all the data is already in the public domain. That as far as my understanding goes doesn't tell us how many people are now cured.

So it kind of brings me back to my original point, why are we, Hooper, Mar, whomever allowign ourselves to be dragged into semantic arguments around statistics when what we actually want to be made clear is how many people were returned to their pre-illness state.

I'm not concerned about what their illness actually was, because the data of PACE is so bad it must have included a bucket load of what we would consider to be our illness, surely if they can't come up with close to 1 in 3 returning to pre-illness status then the whole thing is exposed as double talk and hocom, US guys, is hocum spelled with a 'c' or a 'k'?

 

[Bob]

The PACE Trial paper itself didn't include any data for a 'recovery'. It was only a Lancet 'commentary', and the media, which talked about a 'recovery'. This is a misunderstanding which the authors, and the Lancet, apparently haven't attempted to correct. The authors have confused the situation by talking about people getting "back to normal", when they did not mean 'recovery'. "Normal" was just a statistical interpretation of the word 'normal', and did not indicate either an improvement or good health.

There has actually been a clarification regarding the 'recovery' data, from the authors themselves. They are not pretending that they have published any 'recovery' data.
But the Lancet refuses to retract their commentary, which totally misunderstood the results, and discussed a '30% recovery' rate.

 

[Esther12]

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.

 

[Firestormm]

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?

Personally, I think 30% is crap even assuming any figures supported that. Not sure how it compares with a drug - but it's hardly comparable really, is it? And anyway, they've lost the war. The war of PR and promotion and 'mind-set'.

Rather like psychiatry I suppose. They should work harder on their game-plan. Return to the drawing board. When psychology was being sold as a support it was (I would argue) fine, it's when it became thought of as 'cure' that the trouble started and the data could not be made to back it up.

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.

Anyway, it's a bit difficult for psychiatrists to take over the world if nobody believes in you. I think they've lost the war of words and believability (in terms of cure-all) and unlike Peter Pan I don't believe I can fly, but I do believe that the involvement of psychologists and psychiatrists can help - as part of a multi-disciplinary package that sees a 'medical' lead.

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.

However, as patients, we surely know that - infantile example coming up:

I go to see my clinical psychologist. I am feeling shite. I can't cope with my life with ME. I can't cope with 'life' that refuses to stand still - unlike me. After many weeks of meeting with my psychologist - I leave feeling I have things more in perspective. I feel generally better able to cope - to manage. I have learned to put things in perspective. To accept.

Apply that to a 'clinical trial'. I enter the trial completing the questionnaire and I leave doing the same. Looking at the results of the questionnaire, I - a patient with this diagnosis - have improved. Bingo.

Doesn't matter that I might 'relapse' in terms of my ability to cope when I next experience a 'flare' in symptoms caused by, well, it doesn't matter what. And it doesn't matter if any underlying disease process hasn't been addressed.

Same thing, though perhaps less so in my own opinion, will apply to GET.

Sorry. Enough of my bunkum.

 

[Stukindawski]

I actually had one to one, CBT and GET in the early days of my illness. At the time I had no prejudice about these treatments. I didn't have any stigma about seeing a psychologist as I'd known people who had sought their help. Having someone outside of my 'bubble', was really helpful. When you first get ME, friends and family alike are far too busy deciding what's wrong with you and what you need to get better. It's actually a dangerous atmosphere since often we please people to avoid 'alienation'.

Initially I got a lot out of talking to that psychologist, and she helped me to deal with despair I felt at my ambitions falling away. It was pretty simple stuff really, but sometimes it's the right words, at the right time. Unfortunately, the GET we embarked on towards the end of my sessions and that I carried on after I finished that ultimately flattened me.

The initial benefit thought, just a few words to help me start to come to terms with my 'new life', and having someone to talk to who didn't have an agenda for me is something that, while not curing me, still benefits me to this day.

It despairs me frankly, that the useful part of psychological interventions are not widely available to ME patients, or are lumped in with dubious treatments backed by even more dubious research. If I was going to exercise, I would be much more likely to heed Newton's or Klimas advice (which is anathema for some), which at leasts looks at the patient objectively when setting limits and doesn't seek to deny an over-riding pathology.

 

[Esther12]

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.

I don't know about a lot of this. To me it sounds like you're being too casual about the spending of money on NHS services: this is real money. I know that, politically, there's little real prospect of it being used in ways which are helpful for us, but I don't like just accepting that in my own arguments. At a time of NHS cutbacks, I think that there are moral concerns about moving resources from useful care for other conditions to care for CFS which is of little real value.

re 1st bit: Isn't that exactly what Chalder and White want? More spending directed to their work, etc. I don't really see the value of such an approach. If, ten years later, it's realised that things aren't going as well as was expected, that won't have done much to help us. I expect they'd just say 'Ah, but we've now developed new CBT, with greatly improved results...' or similar. I want the raw data from PACE. It's been sold as a definitive trial, it cost a little money, patients should have access to the evidence so that they can make informed decisions about how to proceed with their own lives. That those involved with the biopsychosocial approach to CFS want to prevent that is indicative of a lot of problems I have with their approach.

re 2nd bit: I have some problems with how GET can be promoted for other neurological conditions, although matters of informed consent, honesty, etc tend to be far less of a problem away from CFS. Also... if GET isn't curative, then it ends in pacing. There seems to be a real lack of honest over this. I also think that there are some really complicated matters here with regards to medicine prioritising functionality above other matters that are important parts of people's humanity (playfulness, freedom, flow, etc).

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.

Possibly I'm coming at this from a different perspective. I'm not sure that I'm that interested in advocacy, so much as intellectual honesty, and having access to evidence that allows me to better understand and make decisions about my life and my place within society.

 

[user9876]

Also... if GET isn't curative, then it ends in pacing.

Great point shows GET is absurd as a management technique.

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.

I always think that people who can give practical advice on how to cope with disability would be far more useful than people who say how do you feel about that.

 

[Dolphin]

Peter White speaking at the Royal Society of Medicine in 2008.
He talks about these slides at around 26:30-27:30 in his presentation: http://www.rsm.ac.uk/academ/video.php

He has used the ME Essential slide (and probably the other slide - I have been paying less attention) in several other talks since then.

I've copied a transcript below

"...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 .."

It is interesting that if he thinks ME is not incurable, because of GET, why won't he publish the "recovery" outcome measure, one of the predefined secondary outcome measures, from the £5m PACE Trial.

http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

The information you have requested is not held. The requested data​

relating to the recovery rates and positive outcomes do not exist. That is​

to say that such analyses have not been done and there is no intention to​

do so. The reason for this is that the analysis strategy has changed from​

the original protocol as described below.​

 

[Firestormm]

Who said ME was 'an incurable neurological disease', Dolphin? Sorry. Saw all this on the MEA FB page. Got lost.

 

[Dolphin]

Who said ME was 'an incurable neurological disease', Dolphin? Sorry. Saw all this on the MEA FB page. Got lost.

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).

 

[Firestormm]

Thanks.

 

[Bob]

"...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 .."

GET is not 'effective'.
GET helps a maximum of 15% of CFS patients feel subjectively better about their symptoms.
GET makes no clinically useful difference to objectively-measured physical disability.
Data, regarding deterioration as a result of treatment with GET, has been suppressed.

Why would White tell patients that GET is an effective treatment, that will improve their disability, when it doesn't improve objectively-measured physical disability by a clinically useful amount?
Why does he say that GET will improve symptoms, when deterioration data has been suppressed?
Why does he say that CFS patients are helped by GET when only a max of 15% respond to treatment?
It doesn't seem ethical.

 

[Esther12]

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?

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.

I think that we were pretty close here, and they they did realise having an actual overlap between 'recovery' and 'severe and disabling' fatigue looked ridiculous (even if only patients cared about it), and but still wanted as weak a criteria for recovery as was possible.

It didn't occur to me that they could leave the thresholds for fatigue and disability overlapping with their criteria for 'severe and disabling' fatigue, but then just add as a proviso that patients could not fulfil their entry criteria.

That their 'recovery' rate dropped so much shows how many patients classed as 'back to normal' still fulfilled their criteria for CFS. [edit - Dolphin pointed out that table 1b shows that the CGI self-rating was more of a limiting factor than the exclusion of those fulfilling the Oxford criteria]