Michael Sharpe skewered by @JohntheJack on Twitter

I read you reverse, @Alvin . Too brain fogged. I should sign off. Talk to you later.

 

No worries, i have done it before as well

 

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,

https://twitter.com/user/status/1003214842902269952
https://twitter.com/user/status/1003331465847934977

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.

 

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!

https://twitter.com/user/status/1003166149373235200

 

I wish, @Sean, but the psych's will still own whatever unexplained space remains. Look what happened with ulcers. And fatigue in jut about every illness.

 

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.

https://twitter.com/user/status/1003309818206216199


and

https://twitter.com/user/status/1003197307360247808


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:
https://twitter.com/user/status/1003309091391922176


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 this makes me especially cross:

https://twitter.com/user/status/1002975332608208896

 

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?

 

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.

 

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

 

Its interesting that considerably fewer GET participants made it back for the 6 minute walking test than other participants.

 

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).

 

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.

 

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:
https://twitter.com/user/status/1002927665815392256


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.

 

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).