Michael Sharpe skewered by @JohntheJack on Twitter

[Inara]

Especially if you dont really want to hear the answer !

Actually my impression is his answers were listened to, people thought about them, took them seriously and replied. That's more than any person with ME has gotten from him. And it's more than he did - because my feeling was he's making a bit fun of the people who engaged with the discussion ("Read the paper"). Of course there were exceptions, on both sides.

 

[Indigophoton]

 

[Lisa108]

Actually my impression is his answers were listened to, people thought about them, took them seriously and replied. That's more than any person with ME has gotten from him.

Exactly this.

 

[Sly Saint]

'You're blocked'.
Most unbecoming Professor Sharpe; maybe try being a bit more equipoise

 

[AR68]

If you are now blocking people on Twitter you are doing so to stifle debate. If you are stifling debate it is invariably because you have no adequate answer.

 

[Snow Leopard]

Twitter is not exactly the right place for this discussion, but then we haven't been able to chat with Dr Sharpe in any other way so...

 

[Lucibee]

We have at least established some useful information from MS though - and it might be as well to summarise that here:

- PACE was "just a trial", that didn't change anything. So why was it fast tracked? There was no urgency, and in fact it sounds like The Lancet were getting quite impatient about the delays in getting it ready for publication. The only reason for fast-tracking is so that it wouldn't be looked at too closely. 'Tho, tbh, I'm not sure that it would have made much difference if TL had looked at it more closely, as they were not equipped to spot the errors anyway.

- MS implies that PACE did not study ME, despite criteria for ME being included in the design, and despite ME patients being recruited. The bluster about not being able to control the media, while actively trying to control the media (via the SMC), and yet not correcting this error doesn't really wash. Although he has never expressly said that they didn't study ME, just that they only studied CFS.

PACE is about CFS. Dare I say read the paper. We can control what is in the paper - not what is in the media - sadly
the media generally appears to call CFS 'ME'

The question he won't answer is: If PACE PIs knew that GET might be harmful to pwME, why weren't pwME excluded from the trial?

- MS confirms that SW wasn't a centre leader - so why hasn't a correction been made in the papers that state that he was?

 

[Lucibee]

Also, does anyone know what article he is referring to here? (He wouldn't answer when I asked for a reference to it)



Edited to include original tweet:

 

[Andy]

Sharpes tweet isn't showing @Lucibee , this is a screenshot of it though

 

[Esther12]

Also, Sharpe's misleading claims about how 'independent' the Lancet commentary are of interest:


(That's an archived link)

 

[Esther12]

Sharpe's always writing about the problems of dualistic yadda-yadda, the complicated way mind and body interact, etc, etc. I expect he's referring to one of those pieces.

 

[JaimeS]

If Sharpe has a conscience and (strangely) I suspect he does, the weight of reversing his opinion is so potentially damaging to his mental health, that it has become inconceivable.

I've often said this. The emotional cost, and the cost of 'sense of self' is too high, now, for them to ever admit they are wrong. Re: whether or not Sharpe has a conscience, though, I can't say.

What??? Surely that would introduce bias and invalidate much of the trial!

Re: materials proclaiming the grand effectiveness of CBT/GET: Well. Yes. They did. And it did.

One of the laundry list of reasons it's an awful trial. Whenever I mention the circulation of promotional materials during trial (and, as I recall, during recruitment) that's when the jaws really drop.

I think the quote you’re thinking of is “The bastards don’t want to get better.”

To be fair, he seems to be framing other people's (negative) points of view in a pretty negative light -- saying that not every patient is going to be swooning over your stellar medical advice, and that's normal.

That's all to be fair to the person who is speaking -- it's pretty clear he thinks the therapists feel this way about patients, so it doesn't speak very well for THEM.

Apart from Tom's studies (below) [which document indirect harm], do we still not have any direct accounts of harm from the trial itself that we can point to?

But they'd have to gather that kind of data. Something -- I don't know. A feeling I have. It tells me they didn't.

 

[JaimeS]

Is there a thread on here where we are recording PACE stories?

I found this one: http://copingbadly.blogspot.com/2018/03/reanalysis-of-pace-data.html

(I'm having trouble tracking down any more - my computer seems to be on strike and is doing everything ..... very.... slowly .... at ...... the ........ moment.)

ME Association did a giant survey on GET and CBT as a whole. I believe there were some narratives about PACE there.

You can also check the STOP GET website -- they were collecting patient reports, and I'm pretty sure some of them were PACE.

I think it will be easier to get negative reports of treatments that arose from the trial than negative reports from the trial itself.

 

[Lucibee]

ME Association did a giant survey on GET and CBT as a whole. I believe there were some narratives about PACE there.

You can also check the STOP GET website -- they were collecting patient reports, and I'm pretty sure some of them were PACE.

I think it will be easier to get negative reports of treatments that arose from the trial than negative reports from the trial itself.

We've moved this to another thread now. StopGET didn't really get very far with patient reports, as far as I can tell.

 

[JaimeS]

We've moved this to another thread now. StopGET didn't really get very far with patient reports, as far as I can tell.

See my reply in the other thread.

 

[Woolie]

He might be a member.

If its any comfort, the mod team do keep an eye out for people purporting to be someone they're not. All are welcome, but they should not misrepresent themselves for nefarious purposes.

It would actually be pretty stupid for someone to join up under false pretences, because once they're logged in here, we can see all their movements.

 

[Sly Saint]

You can also check the STOP GET website

it no longer exists (see my post in other thread)

 

[Tom Kindlon]

 

[Cheshire]

 

[Barry]

Mike Godwin

✔@sfmnemonic

What strikes me as odd is that, it seems obvious when the aetiology of a disease or syndrome is unknown, there are going to be different models for how to treat patients. Disagreement shouldn't be a firing offense.

I like that