Michael Sharpe skewered by @JohntheJack on Twitter

RE:- MEA

http://www.meassociation.org.uk/research/current-research/current-research-studies/
http://www.meassociation.org.uk/201...r-2018-cmrc-research-conference-19-june-2018/
https://www.telegraph.co.uk/news/he...octors-to-apologise-to-their-ME-patients.html (argues for better care and research)

In terms of patients involved and money spent, the PACE trial is one of the largest pieces of research ever done on ME/CFS. That naturally makes it a focus of attention especially if there are errors in it. We simply must not waste such precious patient energy and research funding ever again. Its status as a high powered study likely gave it an undue influence on the provision of treatment by health authorities. I'm fairly certain I can remember references to it in previous responses to arguments that the NICE re-evaluate its guidelines for ME/CFS (when the guidelines remained frozen).

It is also essential to all research going forward that PACE is understood and all of its weaknesses are laid bare so that lessons are learned on the right ways to collect evidence of ability and recovery in this kind of chronic health condition. Especially since those same mistakes are being made on more recent studies and it is simply unacceptable.

I am an ME patient, and when the ME Association challenges PACE, they do with my support and gratitude.
 
Fear of exercise:
Tackling fears about exercise is important for ME treatment, analysis indicates
https://www.bmj.com/content/350/bmj.h227/rapid-responses

"We would like to clarify that we did not say that fear avoidance was the cause of CFS [3,4]. We did not state that the illness was psychological or an exercise phobia. Nor did we say that fear of exercise in CFS was “irrational”. Rather, in an illness where exercise increases symptoms, we believe that being cautious about engaging in activity is understandable [4]. The same processes are important in other chronic illnesses such as low back pain where fear avoidance beliefs have been shown to both moderate and mediate the effects of treatment [5]. Whilst some correspondents have complained that the primary outcomes of the trial were self-rated, we argue that these are the most appropriate measures to judge improvement in an illness that is currently defined by symptoms."

29 January 2015
Trudie Chalder
Professor
Kimberley Goldsmith, Peter White, Michael Sharpe, Andrew Pickles
King's College London
Department of Psychological Medicine, King's College London, Weston Education Centre, Cutcombe Road, London, SE5 9RJ


Interesting that whereas all other comments there were no competing interests, under this reply:

Competing interests: PDW has done voluntary and paid consultancy work for the UK government and a reinsurance company. TC has received royalties from Sheldon Press and Constable and Robinson. MS has done voluntary and paid consultancy work for the UK government, consultancy work for an insurance company and has received royalties from Oxford University Press. KAG and ARP declare no competing interests.
 
Sly Saint said:
@Esther12 thanks for the transcript. I never really twigged before that Simon Wesselys missus was also 'in on it'.

One of the key things was for me Tylee saying:
"
Tylee: "Right, now on that idea about alienation, this is something
that we often find in primary care you know we're trying to tell this
person that it's a psychological problem, they're trying to tell us
it's a physical problem, how do we manage that situation?"

to my mind everything about PACE flows from there no matter how they try to disguise it or dress it up.
Click to expand...

Tylee is setting that up as a problem that wise Chalder can help them avoid though, rather than promoting it as the right approach in the training video. It's followed by:

Avoid Arguments

Chalder: "I think first of all avoiding the term "psychological",
because it's unhelpful and it seems to me to mean lots of different
things to different people, and usually patients think, that you
think it's all in their mind if you use the term psychological, other
people think that there's something lurking in the cupboard as yet
undiscovered, that is creating this problem and of course that's I
think in their mind a bit silly, so I think it's best to avoid the
term "psychological" altogether, and just think about the problem in
terms of how physiological , cognitive and behavioural factors are
working together, and if you think about how what you do influences
your symptoms then it leads on to effective practical management
strategies."


Tylee: "Could you perhaps expand on the physiological cognitive and
behavioral science of how you would assess and how you would begin to
start explaining the eh... the diagnosis to the patient."


Chalder: "Well I think the I think the diagnosis is quite clear and
we know that patients like to be given a specific diagnosis, I think
just saying 'yes you do seem to fulfil a criteria of chronic fatigue
syndrome' is adequate, I think the way the GP describes the
similarities between chronic fatigue syndrome and M.E. was fine, and
I think seemed to satisfy the patient well enough , em , in terms of
explaning how what em the way in which you behave influences your
symptoms, I think it's.. you would start off by just asking them
maybe to go away and keep a diary of their activities with a view to
changing the way in which they manage their activities on a day to
day basis, so that that will then influence how they're feeling,
although of course these changes the patient will feel often takes
quite a long time weeks and even months."
Click to expand...

There are so many annoying bits in those videos.

Joh said:
Click to expand...


To me, that really indicates that it would be best to 'bang on' about the problems with PACE, rather than spend time arguing for 'better' care and research that could easily end up serving the interests of Wessely & co.
 
chrisb said:
Have we previously seen the admission of paid consultancy work for the UK government. It was obviously suspected but, to me at least, this seems a significant statement. Perhaps MS could be pressed for details.
Click to expand...

I thought that was similar to how he usually phrased it, and I always wondered if it was to provide ambiguity over exactly what work he was paid for (I thought there was a COI declaration somewhere where he explicitly said he had been paid for his DWP work)

eg this from Lancet PACE 2011: "PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company)." https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext

I remember thinking that this COI declaration from White (on a peer review report) provided more detail than usual, but it now seems to be off-line, and I can't find a copy of it anymore.

Declaration of competing interests:
I advise the UK government and a re-insurance company about disability related
to medically unexplained symptoms and mental health.
Click to expand...
http://www.biomedcentral.com/imedia/1144466484563326_comment.pdf

edit: White's peer review comment can now be found here: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-12-13/open-peer-review
 
Last edited:
@Esther12

Unfortunately that last link says Page Not Found.

Thanks for that. In that Lancet paper, as well as PDW's statement, MS does also state that "he has done voluntary and paid consultancy work for government and for legal and insurance companies and received royalties....." My recollection was that at the outset he only declared an interest with Aegeon. If both statements are correct it would suggest that paid work was being done for government at some stage between about 2004 and 2011. He needs to say what it was, and when.
 
Esther12 said:
Yes, I noticed that, but thought that including the address for when it was there might help anyone who wanted to try and track it down. I've not been able to find where it has been moved to though, and can't remember what paper it was a peer review report for.
Click to expand...

Oh wow - just realised I am amazing at keeping notes on things (even if they are now an inaccessible mess). It was this White peer review report for 'Chronic fatigue syndrome after Giardia enteritis: clinical characteristics, disability and long-term sickness absence':

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-12-13/open-peer-review
 
Lucibee said:
If MS doesn't like ppl "endlessly banging on" about it, maybe he should ask The Lancet to retract it? Just a thought.
Click to expand...

Which also occurred to me!

'Endlessly banging on about a clinical trial published in 2011 and blaming all the problems patients suffer on that is both mistaken and a waste of time for all concerned.'

But surely if this trial is taken as the paradigm for evidence being used roll out the IAPT programme for MUS it is very likely to be responsible for a lot of patients' problems, Dr Sharpe?

I do not personally need it to be retracted. I think it will over time become a useful record of just how bad trials can be. Maybe Graham's video should be added as an addendum. But I think it is reasonable to ask Dr Sharpe to agree to make a statement that psychological therapies should not be rolled out on the basis of evidence that uses PACE as 'gold standard'.
 
I thought it might be useful (and quite amusing) to put screenshots of some of Michael Sharpe’s “have you read the paper?” Tweets together in one place.

Carol Monaghan, MP and former head of science:
F199EDB5-2BA2-49C2-B4ED-CB1DED5B0790.jpeg


@Carolyn Wilshire, PhD, lead author of the 2018 PACE reanalysis:
96A6F02F-5F62-465D-8895-849AD72468AF.jpeg


@Mike Godwin, lawyer, author and old school chum of Sir Simon Wessely:
1923CF88-2893-4AA6-9D45-3558001E596F.jpeg
 

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Carolyn Wilshire said:
In fact, there's been a movement in Psychology recently to dispense with the traditional logic of null hypothesis testing (is the hypothesis supported or not?), and adopt a more Bayesian approach. So without going into boring detail about Bayes, what this means in practice is that instead of testing whether there's enough evidence to favour a particular hypothesis, you can actively compare two different positions.* You decide if the evidence for one position outweighs that for the opposing position, and if so, by how much.
Click to expand...

What happens if both positions are wrong?
 
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