Michael Sharpe skewered by @JohntheJack on Twitter

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 ...
I propose that we rename PACE to the Schrödinger trial

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.
Thats the spirit :rofl:
 
@Binkie4 I don't know whether he is a master politician and spinmeister, or whether he genuinely believes what he's saying. I find it hard to get my head around someone not seeing all the flaws here, there and everywhere, but he is so consistent that I'm beginning to think he really has convinced himself that it's all good.

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.
 
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.
 
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).
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).
 
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).

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.
 
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).
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.
 
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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.
 
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.

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