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Michael Sharpe skewered by @JohntheJack on Twitter
- Thread starter Indigophoton
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Indigophoton
Senior Member (Voting Rights)
Yes, I think this is the case. Ironically, I think he is as convinced of his position as we are of ours, and doing exactly what we are - trying to make the other side see reason.
This is where an appeal to the evidence ought to resolve things, of course, but for that to work everyone has to not only look through the telescope, but understand what they see.
Unfortunately this is not happening. It seems MS thinks not just PWME, but advocates, scientists, and clinicians in the field are all also in thrall to false beliefs, while the BPS crew are being scientific. For example,
He can't grasp that it's science, not belief nor dislike, that is driving the criticism of PACE. If he could get his head around that, the house of cards would fall down, so I guess it's easier to decide (and claim) the researchers are just fiddling the figures out of bias.
The irony is extraordinary.
Perhaps in the end what will happen is that we will gain critical mass with scientists, medics, advocates, politicians and health organizations who can see clearly, and the consensus will simply go past Sharpe et al, leaving their views behind with them.
Keela Too
Senior Member (Voting Rights)
I’m not sure what he is up to really. There is no real substance to his replies, bar telling people to read papers of his. Pertinent questions are either sidestepped, ignored or derided.
Not sure it is worth trying to engage, but I tweeted this, because - well just because. . . The tweet above was talking of harms of aerobic exercise. Which he says trials don’t show!
Not sure it is worth trying to engage, but I tweeted this, because - well just because. . . The tweet above was talking of harms of aerobic exercise. Which he says trials don’t show!
Lucibee
Senior Member (Voting Rights)
This is one of the things that most bothers me about PACE. That they would run a large randomised trial based on an unproven hypothesis, and one which they have not even designed the study to test.
and
I also conversed with this person - but it was the same reverse thinking. They can't seem to see that they are making very strong (and untested) assumptions about what is going on here.
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I can sort of see where they are coming from, but I passed through that phase too, and dismissed it after I realised that there is no evidence to confirm it, and that it runs counter to the vast majority of patient experience.
It makes me quite cross when ppl talk about others being anecdotes. These aren't one off experiences.
and
I also conversed with this person - but it was the same reverse thinking. They can't seem to see that they are making very strong (and untested) assumptions about what is going on here.
Thread:
I can sort of see where they are coming from, but I passed through that phase too, and dismissed it after I realised that there is no evidence to confirm it, and that it runs counter to the vast majority of patient experience.
It makes me quite cross when ppl talk about others being anecdotes. These aren't one off experiences.
where is any follow up on harms?
how were harms recorded?
the issue may be that too few with ME were included due to selection criteria?
Lucibee
Senior Member (Voting Rights)
Well according to them, there weren't any, so there was nothing to follow up. As I said in the thread, there is a big problem if a therapy consistently tries to reprogramme patients' experience of harm. They are telling patients to dismiss their feelings that exercise/activity is harmful - so how can they possibly have any robust way to measure that? They are basically training pts to lie about their experience. You can't expect to get any useful data from that.
I don't think too few with ME were included. I suspect that those who had ME just muddled along and ignored the "advice" they were given. If you know you're doing yourself harm, there are lots of creative ways to give the impression [even to yourself] that you are complying with therapy when you aren't.
Since they did not measure compliance with the treatment on PACE using actometers, they can't claim that doing GET as specified in the PACE manuals does no harm. Anyone with ME that includes PEM would soon discover they were unable to keep increasing their activity by 10% a week, or whatever the manual specifies, and would be forced to stop doing it, or to cut back their other activities, like going to work, just to complete the tasks. I suspect some pretended they were complying to please the therapists.
And lots of patients didn't do the end of study 6 minute walk, making any between group difference calculations unreliable.
And lots of patients didn't do the end of study 6 minute walk, making any between group difference calculations unreliable.
mention the gmc complaint that dr myhill has put forward and all the people that have written about being harmed by GET
You could also quite some of the reports of harm from the minutes
I find it strange that the PACE people dismiss patient surveys that show high levels of harm from GET, yet insist questionnaire results are robust. A questionnaire is just a patient survey, but carried out with a group of patients who have spent months being told to ignore their symptoms and told to re-interpret them according to the BPS dogma.
Woolie
Senior Member
Its interesting that considerably fewer GET participants made it back for the 6 minute walking test than other participants.
Alvin
Senior Member (Voting Rights)
I think its also "interesting" that they rejected objective measures and iirc Sharpe claimed they didn't exist at the time (as if anyone will fall for that tripe).
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They claim that in trials GET does no harm but most trials didn't bother to look. PACE was relatively good in that it did look but I think they changed there definition of serious deterioration in the Lancet paper from the full protocol. It was hard to meet because the deterioration needed to be measured over two assessments so if it happened late that wouldn't have happened. They also don't know what happened to drop outs. They did publish a paper on deterioration but they used this as an excuse to not give data to Bob in an FoI.
In more general terms the patient surveys report harm or deterioration from GET when done at specialist centers. So even if GET was safe in a very carefully monitored trial it seems that it would be hard to roll out safely.
large donner
Guest
michael sharpe@profmsharpeBoth assume the possibility that associated biological processes may be at least partially reversible. And that question is what the PACE trial aimed to test.
He is using Crawleys definition of biological. Basically deconditioning, lack of sleep etc.
As there seems to be no difference between the arms at long term follow up I wonder what he thinks the aim of the trial eventually revealed.
While there is a reason for long-term follow up to see how a treatment works over a longer period, one of the factors to be considered is that if the original results are due to bias then no difference in the long-term might indicate that.
I became aware of a PACE participant in the middle of the trial who I think was doing GET. They were saying that they complained they were getting worse and then the person interviewing them wrote down they were doing fine or something. The implication was that their symptoms were being treated as psychosomatic and so not even recorded! This is unscientific. Now that we are getting more and more reports like this we have to consider this might have been standard practice. So the issue of GET exacerbating symptoms would probably have been impossible to determine under the protocol used.
Robert 1973
Senior Member (Voting Rights)
Regardless of whether or not it is worth engaging with Prof Sharpe on Twitter, I think his second question is important, as it is one that many may ask and some may struggle to answer satisfactory:
I think I understand most of the reasons why the differences in responses do not provide reliable evidence of the effectiveness of CBT and GET but I would be interested to hear how others would answer this question, in particular @Jonathan Edwards.
I think I understand most of the reasons why the differences in responses do not provide reliable evidence of the effectiveness of CBT and GET but I would be interested to hear how others would answer this question, in particular @Jonathan Edwards.
Lucibee
Senior Member (Voting Rights)
Reports like this are so important to collect - but is there any way to directly link them with the PACE trial? Documentation? Patient ID numbers? It needs to be done systematically. Ideally one would want to collect both good and bad testimony; but given they have claimed that no-one was harmed, not sure that is strictly required any more.
I was thinking of answering this question, but Twitter is not the right place (not enough space), and I've sort of had enough [for] now. I think it is difficult to tell how time-matched the interventions were. Each intervention required different things from the participants, and had different emphasis. The aim of GET was for pts to do 30mins of light exercise 5x per week [so would do better on the 6minWT - if they were well enough to do it]. The aim of CBT was more nebulous ("to change behavioural and cognitive factors assumed to be responsible for perpetuation of symptoms") [so would be expected to do better on questionnaires that asked about symptom perception and fatigue]. The aim of APT was "to achieve optimum adaptation to the illness" [so would be expected to remain more honest about their experience]. All groups required extensive note taking, diary completion, activity planning, and travel to multiple sessions. Of course they produced different responses on questionnaires that asked about symptom perception! The most interesting thing for me is that those in the APT group who "recovered" had by far the best physical performance on the 6min walking test (but best not mention that - also not enough data to be anywhere near significant). Oh, and don't google "differential response" to find out what he meant by that... (oops).
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