article is somewhere in todays Guardian i think . ( edit yesterdays guardian)
The new guidelines were going to say "get rid of Graded Exercise Therapy , and CBT can be used to help , but is not a 'treatment'
But....
a not so 'nice' man on radio 4 this a.m . says they really don't want to loose C.B.T as it is really effective and G.E.T. is a carefully graded ... blah blah...and it would be a great loss to patients . .
It seems the 'professional bodies' say they won't support the new guidelines .
I don't know who's resigned, but the outcome is the new guidelines are on the shelf.
Not exactly a thyroid topic , but perhaps a view into the grubby sounding world of what happens when committee members looking at new evidence and listening to patients come up with draft NICE guidelines the professional bodies involved don't like the implications of..
ME/CFS charities are not happy ,, unsurprisingly.
edit ~ link to article in 'The Science Bit' ,written by Brian Hughes ~ thesciencebit.net/2021/08/0... (is-it-just-me-or-is-the-bmjs-take-on-those-nice-guideline-committee-resignations-maybe-a-little-biased)
~ It is discussing a BMJ article on the 3 resignations and 1 other who has been 'stood down ' by NICE.
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tattybogle
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The overlap between ME/CFS and thyroid is significant - even if you limit yourself to diagnosis/misdiagnosis.
As with so many areas of medicine, is it possible that GET just might help some, but harm others? Therefore blanket application is a major problem. But no-one yet sees how you can identify who might benefit and who might suffer? That sort of analysis (grand term!) could result in the conflicting views we see.
"Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study"
Before hypothyroidism I was diagnosed ( about 30 years ago) with FM and CFS and told exercise was the best treatment....it floored me! My then GP just said in a rather off hand manner that exercise affected some people like that....no help, other than analgesics, was then suggested. After much reading I was eventually able to diagnose a form of RTH.....very late in the day after damage had been done by low T3.
A very expensive private talking therapy was later suggested which I declined. By then I had requested a thyroid test and despite being told my labs were fine ( I now have copies and they were far from fine) I felt far from fine and said I was sure there was an answer and I was going to search for it....."it" turned out to be a form of thyroid hormone resistance!
I can only conclude that I am one of the cohort mentioned in this Paper with low T3 (historic labs show this) causing CFS and FM type symptoms. They are both syndromes, not diseases, with no single effective. treatment
So I totally agree, "The overlap between ME/CFS and thyroid is significant"
The only point is: have the proposers of GET and CBT done satisfactory trials that support what they want to do? The supporters seem to be taking the stance that, "well some of my patients were helped" thinking that therefore they all should be. That's mumbo-jumbo not proper trialling.
Well ..they did do some trials ( search "flawed PACE trials'' ) but they deviously moved the goalposts half way through .The real point is that GET is actually HARMFULL to many people.
rapid Responses to this BMJ article may be enlightening if anyone can be bothered .. i got bored of the whole subject , cos i'v "been there and bought the T'shirt" and now it just makes me too cross.
(Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com)
"22 August 2018
Andrew J Kewley
Student
South Australia
Please do not misunderstand patient views
This editorial stated "On its publication patients expressed anger because they thought that it suggested that ME/CFS was all in the mind".
In anticipation of any future comments about this, I'd like to point out that this is a mischaraterisation of patient views. I have communicated with a quite a number of patients who are critical of the trial in question and none of them were angry because "it suggested thats ME/CFS was all in the mind". I don't know where this view comes from, but it seems to be a misunderstanding of patient views.
Patients were angry that the results of the trial were excessively spun, and that much of the outcome measures specified in the protocol were not reported in the manuscript published in The Lancet. In particular, the thresholds for "positive outcome" and "recovery" were heavily watered down such that they were no longer meaningful.
One of the major criticisms by patients was that the "recovery" (remission) criteria as described in the protocol was not used and in its place, a highly questionable and misleading criteria for "normal" function was used instead. This criteria was used to imply recovery in one of the associated editorials published at the time of the original manuscript.
The criteria for "normal" functioning in the trial was defined as a SF-36 physical function score above 60. A SF-36 physical function score of 60 is less than the 15th percentile of the overall population of men/women that were of the median age enrolled in this study. The median and mode for mostly healthy western women of this age is somewhere around 95/100. Since patients were screened for other conditions that would affect their physical functioning, one would expect far higher scores to be considered recovered. The most strange aspect however was the entry criteria required a score lower than 70/100. Which is to say according to the thresholds used in the PACE trial, you could simultaneously be considered ill enough to participate and well enough to be considered recovered with the same score of 60/100.
The reanalysis by Wilshire et al. analysed the data as close as possible to the original protocol, given the data they had access to. they discovered that on the contrary to claims made by the authors, there was no difference in recovery rates between the randomised groups. This lack of recovery from such treatments is much more in line with patient community experiences with these treatments. Namely that they might be useful for a minority of patients to manage living with a chronic illness more effectively, but that they should not be considered primary treatments that lead to remission.
This example is potentially a textbook example of how pre-publishing clinical protocols is important and how deviation from that protocol is used in an attempt to exaggerate the efficacy of an intervention in a clinical trial.
References:
White, PD, Sharpe, M, Chalder, T, DeCesare, JC, Walwyn, R, the PACE trial group "Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy" BMC Neurology 2007 7:6
Wilshire C, Kindlon T, Matthees A, McGrath S. "Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial." Fatigue 2017;5:43-56.
Re: Pressure grows on Lancet to review “flawed” PACE trial
Kewley (previous comment) makes the key point. The reason why I have signed the letter to The Lancet is that the PACE trial is methodologically so poor as to be uninterpretable. Patients may have expressed concern that the trial inappropriately reinforces psychological theories but this seems to have been used as a smoke screen by the PACE authors and associates to obscure the fact that patient scientists have identified the flawed nature of the trial. I have no personal or professional interest in ME but have been greatly impressed by the ability of ME/CFS patients to initiate the sort of critical review that should have been performed by peers.
The reason why the poor quality of this trial is now so important is that this sort of poor methodology, based on unblinded trials with subjective outcome measures, is widespread in the field of therapist-delivered treatments. A house of cards has been built that will ultimately collapse as it emerges that the same results can be obtained with any form of treatment that deliberately aims to influence patients' judgement of their health status.
Its all about the budget isnt it. Graded exercise is free, CBT is cheap and CBT staff already built into the budget. Also CBT is short term therapy and if it doesnt work its "because patient not compliant. T3, on the other hand is very very expensive thanksto Big pharma.
Graded Exercise Therapy isn't free . it requires repeated therapist imput ..... but it doesn't work, and it's harmful.. most of us had only gone to the GP in the first place because we'd found that gradually increasing our exercise for ourselves, which normally improved our fitness ,was now making us worse.. and most of us were previously very 'into' doing exercise.
If GET is anything like Physio, I expect that you now get a raft of e-mails all at once telling you what to do.
I also expect that you have to record your experience and send it to the GET therapist..........who won't respond, but will cut you off for being non-compliant.
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