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

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Any evidence for that, or is it just based on wishful thinking / bullshit speculation by the authors, which they felt justified in throwing in with their "evidence"?
I believe there was no difference between those who did and those who didn't. That is what this means?
The authors hypothesise that the improvement in the APT and SMC only groups might be attributed to the eff ects of post-trial CBT or GET, because more people from these groups accessed these therapies during follow-up. However, improvement was observed in these groups irrespective of whether these treatments were received, and thus this hypothesis remains unproven.
 
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Between May 8, 2008, and April 26, 2011, 481 (75%) participants from the PACE trial returned questionnaires

...There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.
Well, well. No wonder it took them so long to publish. And, of coure, they would have known there was no long-term difference between groups when they published the 'recovery' data in 2013.
 
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user9876

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University of Oxford news release

CS comment - worth noting the observation from Dr Kimberley Goldsmith: We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term

EMBARGO: Wednesday 28 October 2015, 0001 UK time (US Eastern time: 8pm on 27 Oct 15)

Treatments offer hope for Chronic Fatigue Syndrome (CFS/ME)

Researchers have found that two treatments for Chronic Fatigue Syndrome have long term benefits for people affected by the condition.

The team from Oxford University, King’s College London and Queen Mary University of London were following up patients who took part in a study published in 2011, funded by the Medical Research Council. In that study they looked at four potential treatments for Chronic Fatigue Syndrome (CFS) and found that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) achieved better outcomes than standard medical care (SMC) and adaptive pacing therapy (APT) at one year.

In this study they contacted the people who took part in the original study to find out how they were fairing two and a half years after starting the treatments.

Three quarters of the original trial participants took part in the follow up. It showed that the improvements in fatigue and physical functioning seen at one year in the trial with CBT and GET were maintained in the long-term.

Professor Michael Sharpe from the University of Oxford said: ‘The finding that participants who had cognitive behavioural therapy and graded exercise therapy had maintained their improvement over 2 years after entering the trial, tells us that these treatment can improve the long-term health of people with CFS.’
The team also found that participants who originally had CBT or GET were less likely to have sought additional therapy after the trial than those who originally had standard medical care alone or APT.

Dr Kimberley Goldsmith from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London said: We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term. However as many had received CBT or GET after the trial, it does not tell us that these treatments have as good a long term outcome as CBT and GET.’
There were no significant differences between the four original treatment groups in the number reporting a long-term deterioration in their general health (around 1 in 10 of each group). This showed that there was no evidence that those who received CBT and GET were more likely to worsen in the long term.

Professor Peter White from Queen Mary University of London said: ‘Finding no significant differences in the proportions getting worse over time is a reassurance for those who worry that some of these treatments might make things worse. But it is also a reminder that these treatments do not help everybody, and more research is needed into finding other treatments that help.’

ENDS
Notes to editors
For more information, or to request an interview, please contact the Oxford press office on 01865 270046 or news.office@admin.ox.ac.uk
Chronic fatigue syndrome (CFS) is characterized by a report of fatigue and impaired functioning of at least 6 months duration with no identifiable alternative diagnosis.
Myalgic encephalomyelitis is thought by some to be the same illness, and by others to be a separate disease.
Cognitive behaviour therapy: Help with understanding the illness and coping actively
Graded exercise therapy: Help to gradually increase activity with monitoring
I think this is misleading as a press statement given the null result in the paper. Pushing two treatment branches seems to mislead.

However @Action for M.E. don't see the problem
Action for M.E. ‏@actionforme 5m5 minutes ago
@uab9876 @VictoriaLIVE @UniofOxford We've read the press release and didn't find it misleading. Not sure how media drew conclusions they did
 

user9876

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Well, well. No wonder it took them so long to publish. And, of coure, they would have known there was no long-term difference between groups when they published the 'recovery' data.
Given they would have needed to hire a statistician to work out the mean 6mwt score for those who have recovered when asked some time ago I assume they have been sitting on the null stats for sometime.
 

Chrisb

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When reading the comments, with which I entirely agree, I sometimes feel that the surprise at the poor quality of the science and the failure to take note of valid criticism is entirely misplaced. It is easy to forget at times that this is not about evidence led policy making, but policy led evidence making. The questions need to be about the ultimate objects of the policy, how that policy came to be put in place and by whom. Criticising the science is useful only in so far as it can be used to undermine public trust in government. It is unlikely to have a direct effect on government or its policies .All these nonsense papers are merely about the expression of power and where it currently resides.

The more I hear of TTIP the more I think that preliminary negotiations on that may have started at about the same time as the undermining of ME commenced.

All we can be sure of is that government will lie. It must be remembered that Cameron claimed to have no knowledge of Lansley's proposals for the changes to the NHS after he had promised no top-down reorganisation.

It seems unlikely that a little poor science will be allowed to get in the way of reducing the costs of the NHS and boosting the profits of companies which politicians might aspire to join once the electorate has had enough of them.
 

Sidereal

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Any evidence for that, or is it just based on wishful thinking / bullshit speculation by the authors, which they felt justified in throwing in with their "evidence"?
No evidence whatsoever. People in SMC and APT groups improved on self-reported questionnaires irrespective of whether they received CBT/GET after the randomised phase or not.
 

Sidereal

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Well, well. No wonder it took them so long to publish. And, of coure, they would have known there was no long-term difference between groups when they published the 'recovery' data.
I wanna see the five-year follow-up data. I wonder if the spectacular improvements in physical function in the CBT & GET arms are still maintained in the recovery range (equivalent to recent MI or heart failure patients) or if perhaps they're now only showing a modest effect with mean scores comparable to what a normal person would score while hospitalised in the ICU.
 

adreno

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I wanna see the five-year follow-up data. I wonder if the spectacular improvements in physical function in the CBT & GET arms are still maintained in the recovery range (equivalent to recent MI or heart failure patients) or if perhaps they're now only showing a modest effect with mean scores comparable to what a normal person would score while hospitalised in the ICU.
You're a hard sell. Research Wahlberg would approve.

 

adreno

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Given that the two CFQ scoring techniques change ordering I would have thought that made one or the other or both a nominal scale. Should only quote mode!
Haven't read it to be honest, but I should think a scale of functioning would normally be ordinal.
 

user9876

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Haven't read it to be honest, but I should think a scale of functioning would normally be ordinal.
To be an ordinal scale it needs an ordering or the variable being represented. But if you have two different scoring systems that are both meant to proxy the same thing being measured and have different orders then one order must be wrong. Hence can both really be ordinal scales?
 

Yogi

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Is that from the full download? Perhaps we can upload it here as I don't wish to give Lancet more hits and register to download.

So does Michael Sharpe not disclose his conflict of interest with insurer Aegon. Does that mean he doesn't have it or he just does not disclose it? Regarding Peter White does he not have more insurance consultancy jobs than Swiss Re? What about Trudy Chalder does she not have those COI as she used to work for insurance companies?

Given the other issues identified with PACE how can we take anything that these people say at face value?


I don't know how to do the full quote of your message Esther.
 
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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'


'.... In June 2005 I was awarded Ill Health Retirement as a result of the disabling effects of ME/CFS. In the Autumn of 2004 I made a claim under my critical illness policy with Scottish Provident. This was the start of a nightmare lasting over 5 years.

.....My claim was refused on the grounds I had not had ‘optimal treatment of CBT/GET’, delivered by an appropriately trained therapist. It should be borne in mind: 1) That there are no such ME/CFS therapists in my region East Anglia, privately or on the NHS 2) Even if there were I am not well enough to travel to access and participate in the therapy 2) My ME/CFS NHS medical team did not recommend further CBT/GET in my case. Scottish Provident repeatedly refused to tell me what in their opinion my diagnosis is and what medical evidence they would accept in support of my claim. I asked them that in order to satisfy the policy would I have to undertake further CBT/GET by a therapist specialising in depression and also CBT/GET by a therapist specialising in ME/CFS. Scottish Provident refused to clarify. I made a DPA application to Scottish Provident who stated in their notes that I was refusing to engage in therapy and so get better. What I had actually said was that I would engage in therapies and treatment recommended by my NHS medical team. Getting nowhere I took my case to the Financial Ombudsman Service (FOS).....'

'....At the beginning of this year Scottish Provident finally admitted my TPD claim dropping their insistence on further ‘therapies’. It would appear that the involvement of a specialist solicitor and the weight of medical evidence finally persuaded Scottish Provident that their position was untenable. Over the years I have spoken to a number of people claiming PHI and TPD as a result of ME/CFS. Their experience has been uniformly poor. One lady was told by Norwich Union not to bother obtaining medical evidence as they would only take into consideration evidence provided by their ‘experts’. I have documentary evidence (obtained under the DPA) that Scottish Provident lied to me and misled me. My NHS medical team has told Scottish Provident that their tactics have made my illness more severe. I see from some of the previous posts that a high percentage of CI claims are paid out. I suspect that this is the percentage of claims that are pursued. There is a proportion of legitimate claimants who simply give up because they are too poorly to cope with the tactics of their insurer and/or do not have the savings to pay for private medical reports and solicitors....'

'..... It is interesting that the ‘school’ of psychiatrists who espouse CBT/GET for ME/CFS have close links with the insurance industry. The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White who also heads the ME/CFS clinic at Barts. This clinic only ‘treats’ mild/moderate cases with – you’ve guessed it – CBT/GET. Even NICE doesn’t recommend CBT/GET for the severely affected, yet that didn’t stop PW advising my insurer that my claim should be refused until I undertook CBT/GET again. Also it is very easy to blame the patient if CBT/GET is not effective, rather than looking more closely at the efficacy of the therapy......'
 
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Scarecrow

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Did the authors have evidence of this claim that the patients later sought out GET and CBT, or is this just supreme arrogance? "Our treatment is the only one that works because we say so, so patients who did not get our treatment during the study must have gotten it later if they improved. I mean, how else could they have improved if they didn't get GET and CBT?"
Patients were given the opportunity to have one of the other 'treatments' after one year. About a quarter of the APT group and third of the SMC group opted for either CBT or GET and Sharpe et al stated:
There was some evidence from an exploratory analysis that improvement after the 1 year trial final outcome was not associated with receipt of additional treatment with CBT or GET, given according to need. However this finding must be interpreted with caution because it was a post-hoc subgroup analysis that does not allow the separation of patient and treatment factors that random allocation provides. Importantly, the sustained benefit of CBT and GET was seen in those patients who did not have any additional treatment after the trial, as well as in those who did.
 
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alex3619

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I'm afraid I'm not sure of that at all. I'm currently reading "Risk Savvy" by Gerd Gigerenzer, which I can throughly recommend. He discusses how many doctors practise defensive medicine, don't understand health statistics, and pursue profit instead of the patients' best interests.
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.
 

alex3619

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I've spent the last two days standing in the classroom with a blank mind when students ask me questions, not even a mental thread to pull on to get the information / word they're asking for, no point in me even trying to think about it.
I once stood in front of a class of over 200 computer science students when my thinking drew a blank when things suddenly would not work - I was trying to get a composite video I had put together to actually play on a large screen. I know what you were experiencing. Something similar happened during a seminar where I was co-presenting a talk and the audience included international experts. During my Honours Thesis presentation my vision became tunnellled, I had maybe a tiny circle of vision that worked. I confused the heck out of that same class of computer science students when I consistently confused the words "libary" with "bookshop".

Its one thing to have these problems at home and go to bed. Its another to try to pretend all is well when you are presenting to lots of very smart people.