Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

The thought of so many deluded high profile psychiatrists around the place is pretty disconcerting.

If it weren't so serious it would make a hilarious sitcom.

"We've decided it would be good to improve our scientific knowledge. So we thought the best way is for us to all meet up down the pub, and then we can teach each other!"
"But does that work properly? Don't we need someone else, from outside our circle?"
"Good lord no! If we do that there will be all manner of people telling us we are doing it wrong. We need to stick to what we believe in."

Etc.

 

I do empathise with Michael Sharpe's sorrow at not being about to control what is in the media any more. He must wonder what the world is coming to. Up to a few years ago the SMC had complete control of the narrative in the national UK press. Now he's reduced to writing letters to the Daily Mail. Quite gratifying really. Maybe in another year he'll be writing to the Beano - "Dear Dennis and Gnasher, my best prank is telling people to think themselves better ..."

 

They are not giving up but they are showing what they truly are. At one time, it would have been possible to say they truly believed what they were saying and had a deep belief that they could help patients but that is not possible any more.

They are lying, distorting the truth and deceiving people for their own gain. If they felt that they had something useful to contribute but were not being heard they could have said that NICE felt the trials were not good but XYZ.

Instead they make the assertion that the evidence is good hoping that no one will realise it is untrue. This is
disinformation by any definition and they have sneaked it in.

We have always known they ignore and refuse to acknowledge any evidence that goes against their ideas but they are lying about a professional body.

 

This completely! Over the years people new to ME often take time to realise this, that this has been done knowingly, wilfully and with seemingly no regard for patients.

 

Reminds me of Roger the Dodger, and his book of dodges. Can't fathom why that came to mind ...

 

That is very true. The more such folk have to move out of the shadows and into the cold light of truth, the plainer their ways become evident for all to see,.

 

Exactly. I repeated that comment to my carer this morning, & she looked completely non plussed.... "but thats the whole point, ME isnt like other illnesses where they can do exercise without it doing any harm"

 

Presumblay this is all happening on board the Titanic, whilst Peter White stands on the front edge of the ship with his arms streched out proclaiming "I'm flying" whilst being held and whispered too from behind by Paul Garner. Meanwhile below deck in cattle class Sharpe has slipped away and has disrobed while Robert Winston glares on at him while mixing his water colours and twirling his moustahce simultaniously. Back on deck the lifeboats have been untied and Wessely is busy barging through the crowd knocking women and children out of the way as he causes a domino crowd toppling event hence knocking Esther Crawley and Trudy Chalder into the North Atlantic Ocean. As she hurls over the edge Crawley can be heard yelling, "the children, the children it should have been the children". By this time Wessly has lost his mind and is muttering over and over again, "HMS PACE, HMS PACE my beautiful ship".

 

Exactly. I assume that in their experience as eminent professors, they have generally been able to control the terms of the debate without much question. They're still shell-shocked to find out that things have changed a bit.

 

This might well be the biggest watershed of all. They have always relied on controlling the narrative without needing to rely on truth, good science, etc. Completely stuffed now that is all they have left at their disposal.

 

I’m wondering if having an unhelpful belief that an illness is perpetuated by unhelpful illness beliefs could be considered an illnesses in itself as it appears to lead to dysfunctional behaviours. If so, would they consider it odd if it wasn’t helped by GET?

For some reason I am reminded of a couple of quotes:

“…there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, ‘The bastards don’t want to get better’” (https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132)

“With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better" (https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf)

 

It might require the full Sisyphus protocol.

 

PW singing ‘my heart will go oooooonnnn’ aka Celine Dion’s Titanic song haha

 

Only option left. The bastards have made it abundantly clear they don't want to get better.

 

No, I don't, but I would not be surprised if that would be uncovered to be be NHS policy. I have not looked into it much, but I've seen glimpses in The Netherlands of MUS briefings for I believe our version of the DWP where the same types of advice are given. I strongly suspect doctors are also officially encouraged to do little testing and GP's to act as gatekeepers in The Netherlands. But, as I said, I have not expressly looked into it, so I don't know. (I do think it should be looked into though. And that there should be a place where people can report "MUS" misdiagnoses.)

This indeed. It is purposeful medical neglect stemming from advise based on personal ideology and interests. (I turned out to have Lyme Disease with a lot of stuff that comes with that like Addisonlike symptoms, and a relative died horribly from bowel cancer because exactly this sort of gatekeeping by her GP, who continuously only wanted to refer her to a psychologist until it was too late. )

Throughout history medicine and psychiatry have left a broad, terrible trail of "oopsies" that has caused horror from mismanagement and neglect for the patients involved (the majority of whom were women). It's a pattern, and up to this point I don't think it has ever lead to acknowledgement, taking responsibility or introspection; not per instance and certainly not on the fact that it is a pattern. Which means the same mistakes or opportunistic use of this "memory loss" keep being repeated. I think it is high time that it is discussed and changes made, and there are glimpses here and there that this topic is rising to the public consciousness, as people, mostly women, are starting to write about it these last years.

Accountability and introspection in this area would be new, but could happen. We are living after all in interesting times.

I wish they would stop doing that nonsense. When someone has neurological symptoms and popping blood vessels, or when a woman has severe and/or debilitating abdominal pain combined with odd blood loss issues, it does not matter one flying...er...fjord... how it's going at her job and if she had any quarrels with her relatives lately.

Thank you for looking it up.

 

Merged thread

Article now published.

https://link.springer.com/article/10.1007/s11606-021-07188-4

 

Feels like there should be a legal issue here. Three very prominent medics deliberately flouting, and actively urging other medics to flout, the recommendations of the NICE guideline. And the NICE guideline is not mentioned once in their paper, drivel that it is.