Michael Sharpe skewered by @JohntheJack on Twitter

[Alvin]

I agree with this. I think we as a community need to change focus a little and stop spending so much energy bombarding him with tweets and contesting everything for days. It’s not going to stop Michael Sharpe from doing anything.

I disagree, when you let someone be the only voice on a subject and they sound reasonable people will believe them.

That said i would abbreviate things, a simple your trial claimed that people were disabled and cured at the same time or PACE was called the medical scandal of the millennium by (member of Parliament?), you didn't declare COIs and other concrete, referenced replies would be good for his posts and simple.

 

[arewenearlythereyet]

I disagree, when you let someone be the only voice on a subject and they sound reasonable people will believe them.

That said i would abbreviate things, a simple your trial claimed that people were disabled and cured at the same time or PACE was called the medical scandal of the millennium by (member of Parliament?), you didn't declare COIs and other concrete, referenced replies would be good for his posts and simple.

I think this is right to be reasonable and respond to have our voice heard...up to a point

However Twitter is an absolutely awful medium for a debate/discussion ...it needs to be simple and to the point but after a while it does get repetitive and a bit like tit for tat bickering ..which makes both parties look a bit silly.

I also think that quoting from twitter will soon become a pointless exercise as people are already mentally disregarding it as meaningless evidence due to the volume of dross in it and the lack of context/entrapment.

 

[adambeyoncelowe]

There's a good litmus test for how his posts are being received: does he have more replies than likes? If so, even someone ignorant of the facts will see he's very unpopular. People like to be on the 'right' side.

Whatever he thinks he's doing, I actually think he's showing those who see this discussion that he's out of touch and unpopular. Even if people don't understand the details, they'll see the response he's had and know something's up with him.

 

[Alvin]

I think this is right to be reasonable and respond to have our voice heard...up to a point

However Twitter is an absolutely awful medium for a debate/discussion ...it needs to be simple and to the point but after a while it does get repetitive and a bit like tit for tat bickering ..which makes both parties look a bit silly.

Fair enough but the alternative is not better, letting a fraudster dominate the discussion just gives him credibility and people will fall for alternative facts (unfortunately).
But given the simple and to the point necessary my point about abbreviating things would seem to still make sense.

There's a good litmus test for how his posts are being received: does he have more replies than likes? If so, even someone ignorant of the facts will see he's very unpopular. People like to be on the 'right' side.

Whatever he thinks he's doing, I actually think he's showing those who see this discussion that he's out of touch and unpopular. Even if people don't understand the details, they'll see the response he's had and know something's up with him.

Its not always this simple, easy answers often fare better then complicated but correct ones.
That said we should challenge lies because a one sided viewpoint attracts support

 

[Solstice]

I am reminded of the exchanges on twitter after one of Crawleys talks (Tedx?) where someone who clearly did not know about her 'research' commented that they (the audience, people reading about the talk) would have been none the wiser had it not been for twitter.

Think it's more poignant to focus on the faults in the pace-research though, than trying to get him to confess he fucked us over deliberately.

 

[Alvin]

Think it's more poignant to focus on the faults in the pace-research though, than trying to get him to confess he fucked us over deliberately.

Of course, he would never do that anyways so its a waste of energy trying.

 

[Lucibee]

This is just getting more and more bizarre.

M Sharpe: "I am afraid that I do know what has been done outside trials to produce these reported harms."

Sounds like he is accusing trial participants of deliberately overexerting themselves outside the trial to demonstrate harm. That's just not on.



[Update: he has corrected this to "I do NOT know"]

 

[Dr Carrot]

I disagree, when you let someone be the only voice on a subject and they sound reasonable people will believe them.

That said i would abbreviate things, a simple your trial claimed that people were disabled and cured at the same time or PACE was called the medical scandal of the millennium by (member of Parliament?), you didn't declare COIs and other concrete, referenced replies would be good for his posts and simple.

I agree that we should call him out when needed, but I feel like the battle isn’t going to be won via Michael Sharpe’s Twitter account. If that energy was put towards lobbying parliament I feel like it’d be a more productive use of time, but that is just my opinion. I also feel like going over old ground re: PACE may eventually be counterproductive - it is now quite a while ago and there are many more contemporary things that we should be tackling, particularly as David Tuller is so eloquently and systematically reporting on PACE.

 

[Alvin]

I agree that we should call him out when needed, but I feel like the battle isn’t going to be won via Michael Sharpe’s Twitter account. If that energy was put towards lobbying parliament I feel like it’d be a more productive use of time, but that is just my opinion. I also feel like going over old ground re: PACE may eventually be counterproductive - it is now quite a while ago and there are many more contemporary things that we should be tackling, particularly as David Tuller is so eloquently and systematically reposting on PACE.

I don't disagree with you
That said changing public opinion is a multi pronged approach, one they have been very good at, dominating the conversation, plausible and intuitive lies, falsified research, getting it published in a respectful journal, finding allies that will protect them, influencing medical curricula and treatment plans and so on. If you want to topple their empire you have to play the game better then they do on all fronts because if you don't they will continue to spread their lies far and wide and gain supporters.
A good lie is easier to believe then the truth, and they are expert liars.

 

[Joel]

This is just getting more and more bizarre.

M Sharpe: "I am afraid that I do know what has been done outside trials to produce these reported harms."

Sounds like he is accusing trial participants of deliberately overexerting themselves outside the trial to demonstrate harm. That's just not on.

What he's saying is a longstanding defense by these researchers that the trials show the treatments are safe and that any harms that may happen in clinical use are due to the treatments being delivered differently to how they do in the trials. It allows the researchers to disassociate themselves and their work from harms that patients report from having these treatments (except of course those delivered under the trials).

There are issues with the way in which harms are covered in trials such as PACE, and a few people have highlighted the issues elsewhere. I think delivery of these treatments outside of trials are largely the same though, any differences don't explain the harms.

There's also the issue that in the NHS, harm is often assumed to be impossible on the apparent basis that it's a behavioral disorder, and/or that there is no responsibility on the services to look for and record harms, there is no process in place to do so. I think this is big problem, but the point is that official data on harm is not recorded so we have no real idea how bad it is.

 

[Alvin]

That sounds splendid. We have a deal.

I would like to propose we renegotiate our deal, afaik @Robert 1973 was not blocked by MS but since there is now donation matching if we both donate our agreed upon amounts then we will have double the positive effect.
Is this proposal acceptable to you?

 

[Keela Too]

This is just getting more and more bizarre.

M Sharpe: "I am afraid that I do know what has been done outside trials to produce these reported harms."

Sounds like he is accusing trial participants of deliberately overexerting themselves outside the trial to demonstrate harm. That's just not on.

I read that the other way - ie that he was accusing other therapists of applying his therapies in a harmful manner?

But indeed I see now it could also be taken to mean the patients deliberately harming themselves - weird idea, I mean why would we??

Edit... Replied before @Joel 's post.. You said that already... LOL

 

[Lucibee]

Oops! A typo...

 

[Invisible Woman]

This is just getting more and more bizarre.

M Sharpe: "I am afraid that I do know what has been done outside trials to produce these reported harms."

Sounds like he is accusing trial participants of deliberately overexerting themselves outside the trial to demonstrate harm. That's just not on.

Ah I see he's now saying it was a typo and he does NOT know....

When I first read this I thought it was his way of saying that if harms were caused it was because the therapy was carried out by someone who was not one of their preferred therapists.

Just as White has wanted /recommended that insurance claims not be paid unless the claimant undergoes CBT/GET, even if they have tried it already, on the grounds the therapy wasn't done the right way i.e. their way and by tgeir therapists. In other words get 'em into an approved clinic, generating more business for "friends".

 

[Rick Sanchez]

What he's saying is a longstanding defense by these researchers that the trials show the treatments are safe and that any harms that may happen in clinical use are due to the treatments being delivered differently to how they do in the trials. It allows the researchers to disassociate themselves and their work from harms that patients report from having these treatments (except of course those delivered under the trials).

There are issues with the way in which harms are covered in trials such as PACE, and a few people have highlighted the issues elsewhere. I think delivery of these treatments outside of trials are largely the same though, any differences don't explain the harms.

There's also the issue that in the NHS, harm is often assumed to be impossible on the apparent basis that it's a behavioral disorder, and/or that there is no responsibility on the services to look for and record harms, there is no process in place to do so. I think this is big problem, but the point is that official data on harm is not recorded so we have no real idea how bad it is.

This is what is happening with new forms of CBT and GET being applied in Scandinavia. Especially in Denmark with 'Funktionelle lidelser', the CBT in question is so impotent that there is no way it will ever be able to harm patients. The researches then use this as ''evidence'' that CBT and GET can not possibly harm patients.

Of course it's the same with PACE, since the authors conveniently dropped using actometers, there is no way of knowing if any of the patients even increased their activity level while doing the treatments. Which honestly is one of the biggest flaws with PACE.

 

[adambeyoncelowe]

Since Yellow Card won't record harms from psychosocial therapies, can someone set up a site for people to register those harms? Then perhaps we can collate the data and send it to the relevant authorities.

All it needs to be is a website that captures the same info as the Yellow Card website, but with psychosocial options to choose. It would need to be managed by a trustworthy source, and include enough specific detail to capture specific incidents, but it could be very useful.

 

[Amw66]

Since Yellow Card won't record harms from psychosocial therapies, can someone set up a site for people to register those harms? Then perhaps we can collate the data and send it to the relevant authorities.

All it needs to be is a website that captures the same info as the Yellow Card website, but with psychosocial options to choose. It would need to be managed by a trustworthy source, and include enough specific detail to capture specific incidents, but it could be very useful.

MEAssociation ? Sincevthey have already done a survey on this?
What is the PACE follow up that shroedinger' s data keeper is involved with? Is this not a long term follow up with perhaps harm reporting? Sorry don' t know about this but have faint memory of previous duscyssions ...

 

[adambeyoncelowe]

I think something more detailed than a survey, and open for reports indefinitely, would be helpful.

 

[Lucibee]

Since Yellow Card won't record harms from psychosocial therapies, can someone set up a site for people to register those harms?

I thought #MEAction did this a while ago as part of #StopGET. But there does need to be a more systematic way of recording harms from non-pharmacological therapies, including psych, medical devices, etc.

 

[TiredSam]

I would like to propose we renegotiate our deal, afaik @Robert 1973 was not blocked by MS but since there is now donation matching if we both donate our agreed upon amounts then we will have double the positive effect.
Is this proposal acceptable to you?

It is. I shall donate on the assumption that @Robert 1973 has been blocked by MS. It may be that @Robert 1973 and a large number of his vociferous, militant and vexatious supporters claim that he has not been blocked, but that's obviously because they haven't had enough CBT to correct their illusory beliefs. It is not appropriate to actually look at twitter posts to establish whether @Robert 1973 has been blocked or not, as this would be unduly onerous for all concerned.