NICE is ambiguous in terms of the need for the presence of some form of PEM. it is listed as both one of the essential qualiaties of the fatigue AND as one of the multiple possible other symptoms. I just don't get how the quarter who did not meet Oxford could all have been within four to six months of their illness and therefore met NICE guidance.
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Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder
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Arnie Pye
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
Oups. However it kind of applies anyway so I'll leave it thereI think you mean flouting, not flaunting.
Technically all their fraud is permitted by the rules and so they can simply point at the rules and say "no fraud" because the fraud keeps getting normalized and their work increasingly exempted from the normal process. Shows how important the distinction between the letter of the law/rules and their spirit is.
Andy
Retired committee member
Trial By Error: More CBT Research from Sir Simon and Professor Chalder
https://www.virology.ws/2020/08/12/...esearch-from-sir-simon-and-professor-chalder/
https://www.virology.ws/2020/08/12/...esearch-from-sir-simon-and-professor-chalder/
we haven't had a king for rather a long time(we use the term 'the Queens english', but I guess as a former colonial you might not be aware)
Ha, yes, I am aware there is no king at the moment. (well, maybe in the US we have a wanna-be.) My dictionary lists "the King's English" as a reference for "pure" English. It says "the Queen's English" can be used if there's a queen but suggests that is not necessary. But I'm obviously not an expert on these things. Plus, I was just watching Hamilton, so that could have influenced my word choice.
Jonathan Edwards
Senior Member (Voting Rights)
Simon M
Senior Member (Voting Rights)
Lots of great analysis on this thread (no surprise there).
One point that I didn't see mentioned was that the comparison here is with baseline i.e. there is no control group (such as a waiting list control group). People may modestly improve over time in these situations regardless of bias. Also, patients might be getting better medical control of pain/sleep/mood issues at the clinic and they do from their GP. It would be interesting to see what the CBT and graded exercise gains would look like if the PACE standard medicalised care group gains over six months was subtracted.
I suspect this is a small factor than the enormous issue of missing/imputed data, and, of course, the lack of objective measures.
It does seem likely that this paper is being produced to influence the ongoing NICE review of CFS/ME treatments. Though I don't really understand how adding yet another flaky study to the evidence base gets them anywhere.
One point that I didn't see mentioned was that the comparison here is with baseline i.e. there is no control group (such as a waiting list control group). People may modestly improve over time in these situations regardless of bias. Also, patients might be getting better medical control of pain/sleep/mood issues at the clinic and they do from their GP. It would be interesting to see what the CBT and graded exercise gains would look like if the PACE standard medicalised care group gains over six months was subtracted.
I suspect this is a small factor than the enormous issue of missing/imputed data, and, of course, the lack of objective measures.
It does seem likely that this paper is being produced to influence the ongoing NICE review of CFS/ME treatments. Though I don't really understand how adding yet another flaky study to the evidence base gets them anywhere.
Jonathan Edwards
Senior Member (Voting Rights)
Maybe not so small. Most of the improvement in PACE was seen in all groups with only a slightly bigger change for CBT and GET. At two and a half years all groups had improved - and to the same extent.
My own suspicion is that with some chums on the committee that the authors of this paper will be well-enough informed that the committee also includes several people who are intelligent enough to make sure any such attempt goes precisely nowhere! It looks to me like a shooting in the foot. The clearer it is that the literature has been produced by people who can do studies as bad as this then, as you say, the less likely they will get anywhere.[/QUOTE]
I reckon they work on the basis that as long as the study exists it’s adding to their case. However once you actually get reviewers or in this case a Committee that looks beyond the abstract and doesn’t take conclusions on face value the fact the content is so shoddy should work against their case.
Barry
Senior Member (Voting Rights)
Hopefully more borne of desperation then.
good point, and I could have made more of it. I certainly had that in mind but in re-reading I see I didn't make it explicit.
I'm curious to see the peer-reviews, assuming they're in fact published.
and from the article right after PACE in which Wessely was credited with finding treatments that led to cure or recovery in more than a thir of patients.
rvallee
Senior Member (Voting Rights)
I still don't understand how the timeline is supposed to work. The participants were consecutively recruited, this is stated in the paper, and evaluations were at discharge, then after 3 months. How does that span 2002-2016? Unless those 900 or so patients account for all the referrals to this clinic during those 14 years. So about 80 patients per year. How much does that clinic cost to operate? Why only one clinic when we know for a fact that there is no standardization, every clinic does their own thing, even per patient, and there is no oversight or monitoring. So at best this would be a very poor evaluation of that one clinic.
And if data are limited to 3 months follow-up, why not use more recent data, say the last 5 years? Or even the last 2 years? 20 fortnightly adds up to about 40 weeks, + 12 weeks follow-up gives us a year. So in fact a year is all it takes, why go back to 2002?
This looks like the mother of all cherry-picked pies.
Chronic fatigue or CFS, obviously an invalid sample.
This would work if there had been follow-ups years after, say at 5-10-15 years. But it's limited to 3 months after discharge. The only way this makes sense is if the "treatments" continued for the whole duration but it's limited to 20 and would be weird anyway.
None of this makes any sense. I can't read this carefully enough but the gaps are glaring.
This is obviously completely ridiculous. Extrapolating from limited data is not real science.
And if data are limited to 3 months follow-up, why not use more recent data, say the last 5 years? Or even the last 2 years? 20 fortnightly adds up to about 40 weeks, + 12 weeks follow-up gives us a year. So in fact a year is all it takes, why go back to 2002?
This looks like the mother of all cherry-picked pies.
@rvallee I don't think the data time span information is so strange. It's simply a trawl through the records or all patients who have been referred to an outpatient CF/CFS clinic over a long period. It's a service evaluation, not a research project.
Each individual patient will be referred for a course of treatment lasting up to 20 fortnightly sessions, and then referred back to their GP once the course is finished and probably have no further contact with the clinic.
If my experience with my local ME clinic is anything to go by, they will not be under ongoing care of the clinic after their course of treatment is completed. So for any individual patient, their records will just cover that year or less.
I assume the data includes all the patients with CF/CFS who underwent CBT at the clinic over that nearly 20 year time span. They went back that far in order to make the sample size as big as possible to try to make it and impressive service evaluation I guess. Judging by the numbers who actually completed the questionnaires at all stages, they needed to go back that far to get sufficient data.
People like Wessely and Chalder probably only see a few CFS patients a year, as they do a load of other stuff as well.
Each individual patient will be referred for a course of treatment lasting up to 20 fortnightly sessions, and then referred back to their GP once the course is finished and probably have no further contact with the clinic.
If my experience with my local ME clinic is anything to go by, they will not be under ongoing care of the clinic after their course of treatment is completed. So for any individual patient, their records will just cover that year or less.
I assume the data includes all the patients with CF/CFS who underwent CBT at the clinic over that nearly 20 year time span. They went back that far in order to make the sample size as big as possible to try to make it and impressive service evaluation I guess. Judging by the numbers who actually completed the questionnaires at all stages, they needed to go back that far to get sufficient data.
People like Wessely and Chalder probably only see a few CFS patients a year, as they do a load of other stuff as well.
rvallee
Senior Member (Voting Rights)
Right, the only way the timeline makes sense is if those were ALL the patients referred to that clinic, to account for the consecutive statement. In one clinic. This adds up to an average of 60-70 per year. For no discernible change, as no objective outcomes were used. In a population that is defined by having chronic fatigue, which is something like 10% of the adult population.
As we know none of the clinics have any standards, everything is ad hoc, between the clinics and for each patient. So at best it's an evaluation of that one clinic of a set of treatments that are unique to each patient and have changed over the years, at least according to the authors who surely can't keep churning out research papers if things have not changed at all since 2002.
The conclusions are pure fiction.
It "could" be. Even though it's used in practice and so is clearly not, as this evaluation shows, and everything else before it and after. This is completely ridiculous and detached from reality.