Michael Sharpe skewered by @JohntheJack on Twitter

I propose that we rename PACE to the Schrödinger trial

Thats the spirit

 

Expert liars lie to themselves first. Then they practice those lies on others so that the lies gain weight, refining the details as they go. Each telling convinces themselves ever more.
In this way they are able to convince themselves completely the big fat whoppers they tell are the truth; but their identity is attached to their fantastical fabrications, so when you try to expose them, it's their core (false) self you are threatening.

One will never ever get any kind of concession from a person like this, only more lies, and if that doesn't work, they will attack the challenger personally, gaslight, project, deflect. It's a dead end to engage directly with this kind of person.

Publicly exposing the untruths perpetrated by an individual who operates like this is one thing--but trying to get them to concede or admit any wrongdoing is a fool's errand.

 

https://twitter.com/user/status/989293666446458880

https://twitter.com/user/status/990061766251032576
https://twitter.com/user/status/990095651013881856

https://twitter.com/user/status/990110482903257088

 

he didnt refute the fact that his work is being misinterpreted with harmful effects - so that could be an admission that he knows that

 

The DWP gave £90,000 to PACE which, in the context of contributions from the other funders, is the smallest of all contributions (based on Freedom of Information requests).

 

But when you consider the amount paid to those in ESA & PIP and what claimants have to go through when being assessed it's a huge sum.

I'm sure the ME biobank could make good use of it.

 

Regardless of sum, it is the only time (according to an FOI) that the DWP have ever contributed to a research trial, apparently because of the return to work content (which I don't think materialised).

 

Questioned about duty, and replies about his job; not the same thing. Especially as the duty in question is at the very least a moral duty, and possibly even more than that ... are there any professional or legal codes being broken by not speaking out?

Maybe due a Jobsworth award. https://en.wikipedia.org/wiki/Jobsworth.

 

okay so if he was not studying ME then he will support any appeal a patient makes that is denied benefits that advocate CBT/GET. And his answer will likely be thats not his job so we can just use his tweet as evidence that PACE cannot be used as a basis for any denial if the patient has ME in their medical records or application.

 

Yes that was well known before I put in the FoI requests but in the context of the contributions by funders that have been made public, it's still a relatively small sum.

However, it appears to me that the then government may have wanted a particular solution to the problem of 'ME/CFS', given that the DWP and the DoH are, of course, government departments.

Interesting to note that not only did the DoH not want their logo on PACE material, they also (it appears) did not disclose a further payment of £1.6m to the PACE trial.

 

this thread may be of interest:
https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/

 

It's a tricky one that, because in principle the interests could be either conflicting or complementary. They could argue their primary interests in promoting a trial investigating possible remedies for ME were both altruistic as well as pragmatic.

Edit: Not saying it's what I think, just what they might try to argue.

 

I know - I've been to the National Archive and seen the correspondence from the early/mid nineties regarding 'advice' given to government.

 

Thank you for your work on the FOIs @AR68.

I understand where you're coming from in terms of the size of contribution.

However, from the perspective of claimants the size of benefits awarded in terms of PIP and ESA are huge, though they barely constitute a drop in the ocean of overall DWP funds.

When you look at the investment in biomedical ME research in the UK £90k is a lot of money.

The DWP should (but probabky won't) be a held accountable for poor use of public funds and supporting such shoddy research.

 

Given that the leading researchers are sufficiently intelligent to understand that acceptance of money from the DWP would inevitably prejudice the objectivity of the exercise, it does seem strange to have accepted such a sum.

 

Then why don't they altruistically fund other diseases? Why just ME?

 

What do all of you think about the idea of shifting the focus more to broader issues like e.g. framing unexplained symptoms as psychiatric, instead of just ME? I see that some folks from UK are so inundated in the PACE issues that they seem to loose the bigger picture. Almost like the PACE and ME is the only problem, and it's just not true. There are many other syndromes being put in that basket, POTS, IBS, EDS, mast cells, etc etc... the list is too long, and some of these syndromes already have a well established mechanisms. I think it would be uselful to somehow show to the public that actually all of these syndromes have very little to do with psych issues and that things like somatoform disorders probably don't even exist(although most doctors are very afraid to say that) or are so rare that it's irrelevant.
Pwme, seem to have quite unique knowledge and insight into political and other issues among all these communites that could prove very useful to many patients.

 

I wouldn't
Sometimes its best to give people the rope to ruin themselves, if he wants to turn actual diseases into psychosomatic bullshit he will find himself with few allies and a lot of adversaries without a scapegoat to cast blame upon.
This is of course not a risk free strategy, if one has enough influence they can affect lies into policy, but one can still only go so far before the public turns on him.

Plus if he succeeds then its more evidence we can use, he turned real diseases into psychosomatic lies just like he did for ME/CFS.

 

You might want to encourage more dialogue on the subject of MUS (medically unexplained symptoms) here: https://www.s4me.info/threads/must-fight-mus.2626/

 

You don't need to convince me, you are preaching to the converted . I was simply pointing out that it is possible to fund people to do things because you want to help them, and that the DWP would almost inevitably argue that was their motivation. I mean, they would hardly argue it was because they wanted to screw people over to get them off of benefits!