Michael Sharpe skewered by @JohntheJack on Twitter

From these tweets I think it's pretty clear that Wessely doesn't understand what Hannah Arendt meant when she coined the phrase 'banality of evil'. It's use does not in any way mean "equivalent to the worst excesses of the Nazis".

 

So, first we were so scary SW moved to a war zone to get away. Now, he's voluntarily engaging on twitter.

I think it's a good sign. This twitter feed will do nothing to change the stance of the BPSers, but is very important for all the others without a dog in the race who read it. As others have said.

Twitter is a very limited medium, but has a great reach so we may be attracting the attention of those interested and curious enough to ask more questions.

If Wessley is now involving himself, he must think Sharpe was losing face on behalf of their cabal. Well done guys.

 

While I agree, I feel like the audience for these tweets is so, so low. One would have to follow both Simon wessely and an ME patient in order to see the full discourse.

 

Sure, for now but the discussion is out there. You never know who will retweet. We don't know for sure who is reading it. It's not the storm that will bring the ediface down, but it is more water damage to the foundations.

 

If they weren't rattled they wouldn't be engaging. This is a far cry from when we were told 'science is self correcting. Do a bigger trial and prove us wrong'.
The very fact they feel the need to defend themselves by minimising the impact PACE has had indicates they do not feel as nearly as secure as they once did.

Keep it up guys, you're doing very well indeed.

 

Since then they have learned we need more CBT and occupational therapy to get back to work? According to which trial?

So the lesson from PACE was more CBT and OT is needed? Even if it was true how come they didn't claim that in the last 30 years. The man's just delusional.

 

I was wondering that.

Also - have they moved from claiming that it was just that 1 year was too little time to show an improvement in employment outcomes? They've still not release their employment outcomes for 2.5 year follow-up.

 

Indeed?! Always reminds me so much of "Arbeit macht frei". Yes, paid work = employment (no, caring, e.g. for family or others, volunteering etc. are bad because they don't contribute to profit; and relaxing or enjoying are worse, too) brings fulfillment, salvation and, yes, even health!
(All those poorly paid people who work like hell and still have problems with paying for food and shelter are simply fools and therefore to blame if they don't feel fulfilled by their jobs.)

What he probably means is that for most humans isolation is negative (how trivial), and for some people employment means they'll have contact to other humans which some people enjoy. Of course, there are so many other possibilities to have contact...but these are BAD because they're unpaid. And let's forget for a moment that many sick people, like pwME, simply can't go out in order to help with isolation.

This fixation on paid work (profit making for others) is disgusting.

It's about saving money for the DWP, not about helping people.

 

Our magic homeopathic remedy that was watered down 1 part magic potion to one ocean didnt work, therefore its obvious we need to give you two droplets instead of one.

 

Does he say here that CBT and GET don't bring people back to employment/work?

 

It seems he does say so yet he then span it to start the bidding for more CBT and GET. He also tries to say all we need is more and occupational therapy, you know those people who put an extra cushion on your chair at work in agreement with your employer to enable disability equality in the workplace.

A number of things going on here, one is could you potentially get a certain disabled person a job that suits them whereby they can sit down all day in an office without causing more symptoms. In some cases of certain disabilities, yes.

Two, is that a cure or treatment for ME? No!

Three does this even fit the model used in the PACE trial that ME is simply false illness beliefs and deconditioning? No!

Pouring someone into a better chair in an office who used to be a plumber or a PE teacher etc is not a cure for ME and proves nothing about the efficacy of the PACE treatments except that the BPS can never get their story straight on what they claim to do.

All it "proves" is one can ignore the physical functioning abilities of someone, infact they could even get worse in this kind of "rehabilitation" but if they manage to hold the job down they can be declared a success story by Wessely and the DWP.

 

I genuinely agree it's past time to stop engaging him.
ETA: Unless it's simply to point out reality; locking horns with his garbled nonsense feeds his endgame.

 

@Lucibee is right, he's not questioning Carolyn's motives but her questioning of the PACE authors' motives. Why he is choosing to engage is another question. I would agree with him that Nazi comparisons are virtually never appropriate or apt. However, this hypersensitive soul is the same guy who claimed to feel safer in Afghanistan than in London because of patients and then insisted he didn't mean it as a joke. So best not to take his concerns too much to heart. He blocked me long ago on twitter or I might respond to him directly. But someone should ask him if he believes comparing patients to Mideast terrorists is appropriate.

 

anyone asked Sharpe about the 10 year follow up feasibility study that was given the go ahead?
https://www.hra.nhs.uk/planning-and...ies/pace-10-year-follow-up-feasibility-study/

 

I'd rather see the results of the 5-year long-term follow-up study first...

This is what is proposed for the 10 year follow up:

But they don't say how they will select the centres or the participants, just that it will be random. We know there was imbalance between centres. Will it include those lost to follow up during the main trial or only those who completed (already down to 75%)?

I don't understand why they need to do a feasibility study anyway. Given the controversy surrounding this trial, they should be checking that *all* participants are now OK.

 

I think it's a definite statement that PACE didnt get people back to work. If i was on twitter i would double check that with him

 

I think that is the point. PACE supposedly confirmed to public and medical professional opinion that PwME had a good chance of improvement, and recovery even. It apparently ratified previously suspected beliefs about PwME; and the national press picked up on it eagerly.