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Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

Yogi

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http://getinsuranceadvice.com/critical-illness-a-dreadful-experience-with-scottish-provident/

' The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White'..'

One needs to have this confirmed exactly what all their insurance conflicts of interests are.

The pace trial had started during the period of that reference to Scottish Provident.

The Conflict of interest with the DWP needs to be made clear on all reporting in the media and the Lancet itself.
 

JohntheJack

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with participants originally assigned to SMC alone (73 [63%] of 115) or APT (60 [50%] of 119) more likely to seek treatment than those originally assigned to GET (41 [32%] of 127) or CBT (36 [31%] of 118; p<0·0001)
I find that interesting.

First, given how much patients want to improve and how some had been told CBT & GET are effective, then a number of those who did not receive CBT & GET would be expected to try them. They did, and, as we know, they didn't do any better in the long-term follow-up than those who didn't.

Second, if CBT & GET are genuinely effective, and given that it is accepted patients were still very ill even after the 'moderate improvement', then you'd expect the patients in the CBT & GET groups to persist with CBT & GET. In fact a substantial majority did not. They voted with their feet so to speak.
 

Chrisb

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There appears to be an interesting discrepancy between the language of the press release and the reported comments of Sharpe and White. Correct me if I am wrong. My concentration is poor.

The release talks of "long term benefits for people affected by the condition". Sharpe and White seem to refer to some people benefitting. Thus the press release gives the impression that all sufferers should have this treatment but those who wrote the report cover themselves knowing full well that the treatments are not beneficial to some and likely to be harmful to others.. They do not seem to have been asked what steps they took or intend to take to identify those unlikely to benefit or who might be harmed. It would be interesting to know how this discrepancy was allowed to arise.
 
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http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

Not fantastic (they do not dig deep to explain in which way the PACE trial is flawed), but certainly better than the DM and the Telegraph.
Surprisingly good for the Graun though.

Anyway, I heard the phone-ins on BBC 5 Live and Radio 2 and a miserable time was had by all. First up was Sharpe on 5. I've never heard his voice before (and indeed only caught the end of him) and was struck by how he managed to sound both oily and gravelly at the same, like a malevolent daemon transmitting thoughts into sound from across the great divide. He seemed to be on reasonably emolient form, making the point that his treatment wouldn't work for all (although that it would injure the ones it didn't help went unmentioned).

The patients themselves were of a type (used to be more ill, a bit better now) and noticeably didn't ask awkward questions. I suspect that they were screened beforehand. The worst anyone said was that GET probably worked for some but it didn't help them. I was dying for someone to point out that no-one was any better than those who recieved SMC but it wasn't to be. Host Peter Allen was very sympathetic and made the good point that people under the CFS umbrella were liable to have all sorts of stuff, but as far as I heard didn't put Sharpe under any pressure at all.

Vanessa Feltz on Radio 2 was a touch better. Up against a Dr. Mike Smith (?), she did at least put the idea that it was cruel to push patients through exercises that made them worse but he was having none of it, talking up the great "expertise" of the therapists (as if they aren't just psychiatric nurses armed with a handbook and a nice line in teeth-sucking) and making damn sure we don't fall into self destructive patterns or some such.

The phone-in and emails were a least a bit feisty. There was at least one stress related fatigue patient who found GET helped, but others made the point that the Telegraph and Mail stories were bollocks, that PACE included CF patients and not the severely affected and one did point out the WHO code (though this was really a bit fiddly for a two minute radio spot). Once again, no one pointed out the elephant in the room, that people on SMC were no worse than CBT and GET.

Another problem was that people who did improve talked about increasing activity gradually, giving credence to the treatment. At some point someone really should have pointed out that there is a difference between doing this at your own pace and being pushed into things you can't do with the guilt and shame of bringing your illness upon yourself hanging over your head. The experience of GET was sorely lacking.

Anyway, is this the last of the trolls lurking under the PACE bridge? I'm sure it's been lost on no one that the way these results have been dribbled out, diarrhoea-like from the chafed anus of pseudo-science, has probably led to the public thinking there are several trials backing each other up, where in fact there is simply a growing mound of runny shite, all from the same source. Every six to twelve months we get another stinking bout, all of it tainted with the same bullshit protocol. I seem to remember how everyone stressed how important it was not to get carried away over one trial with Hornig and Lipkin, whilst with PACE one big RCT here is apparently proof positive of everything. Perhaps we should be gratetful lest they do it all again.
 
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TiredSam

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Yes, indisputably. Yet I can cite examples of doctors who DO get it. Being a doctor does not make it impossible to get it. Its just that not enough do. If I recall correctly, Gigerenzer finds only about 80% of doctors fail basic statistics. Its not intrinsically impossible for doctors to get it, its just far too uncommon.
Agreed. I'm very lucky with my doctor.
 
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@worldbackwards wrote: "First up was Sharpe on 5. I've never heard his voice before (and indeed only caught the end of him) and was struck by how he managed to sound both oily and gravelly at the same , like a malevolent daemon transmitting thoughts into sound from across the great divide. He seemed to be on reasonably emolient form, making the point that his treatment wouldn't work for all (although that it would injure the ones it didn't help went unmentioned)."


Hearing or reading the word 'emolient' will forever more conjure up scary images of 'oily' and 'gravelly' Michael Sharpe in my mind. Eeeek and yuck.
.
 

TiredSam

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Vanessa Feltz on Radio 2 was a touch better. Up against a Dr. Mike Smith (?), she did at least put the idea that it was cruel to push patients through exercises that made them worse but he was having none of it, talking up the great "expertise" of the therapists (as if they aren't just psychiatric nurses armed with a handbook and a nice line in teeth-sucking) and making damn sure we don't fall into self destructive patterns or some such.
The push-crash cycle is a self destructive pattern, and the therapists positively recommend it.
 

Sidereal

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I'm sure it's been lost on no one that the way these results have been dribbled out, diarrhoea-like, from the chafed anus of pseudo-science has probably led to the public thinking there are several trials backing each other up, where in fact there is simply a growing mound of runny shite, all from the same source. Every six to twelve months we get another stinking bout, all of it tainted with the same bullshit protocol.
I suspect they are drip-feeding us the excrement spread out over years to maximise the duration and impact of this one "study" on the public consciousness. Putting out one paper per year you get to call a press conference every time, followed by a new round of anti-patient press propaganda every time. I mean, they finished collecting these follow-up data in spring 2011, who on earth takes 4.5 years to write & publish such a basic paper.
 

TiredSam

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Good advice, thanks. I phoned my family in England, they hadn't seen it because one of them had pinched the front page so they could do the crossword on the back, and I was told "don't worry, plenty of people can think for themselves anyway". It's easy to fall prey to the fear that if it's in the papers, everyone will see it and believe it. Good to be reminded that that's not necessarily true.
 

snowathlete

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Well although this makes me sick, on principle, I don't think it will do much harm. What's new here? Or even soli and defensible? There is increasing awareness that PACE is seriously flawed and this is slowly getting out to those outside of the MECFS community more. Everyone just needs to continue the great work they've been doing to expose it.

There isn't really anywhere for the people behind PACE to hide, they can't suddenly make PACE actually work, so they are selling something that cannot ultimately be sold as quality goods that can last. They have conflicts of interest and it is too difficult for them to admit fault and that their work is a failed mess. I find it disturbing that either they, and the people in the press, know what harm this has all done to patients, or that they are so wrapped up in their own ideology that they can't step back and see that. I suspect it is a mixture of both. Either way, it doesn't reflect well on our society and the people in it who should be helping people.

Thanks again to everyone working hard on exposing the truth of things. Keep going everyone and don't be discouraged by a new release of the same old weak narrative. If anything it may actually help us as Tuller's work can't be dismissed as unimportant because it's about an old story. The same problems are still current and need to be addressed.
 

TiredSam

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If things carry on like this for much longer the UK will become a laughing stock, sidelined and overtaken by other countries where scientific research brings increasing advances, and with patients going abroad for treatment. If compassion and rational argument isn't enough to make the powers that be change their policy, then in the end maybe embarrassment will be. The annoying thing is having to wait for it.
 

DanME

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I must say, this is the most disgusting paper, I have ever seen. There was no statistical difference between the groups. End of story. The hypothesis, that CBT and GET work, must be rejected. To say, maybe the other patients did CBT and GET without our knowledge, is the epitome of pseudoscience. It's illogical nonsense. Are the people, who peer reviewed this, brain dead?

No, it's not even pseudoscience, it's antiscience, the University of Oxford should be ashamed of this!
 

SOC

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It is easy to forget at times that this is not about evidence led policy making, but policy led evidence making.
Yep. There's it is in a nutshell. BPS "research" is policy-led evidence-making, nothing more. We're not going to make progress fighting this crap unless we keep this point in the forefront of our minds and advocacy approach.