NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

[Barry]

There is a different conclusion which is that they don't follow up so they don't see harm because they cover their eyes and look the other way. The problem becomes one of whether therapists acknowlegde harm (and if a protocol says symptoms can worsen initially then perhaps they effectively encode harm as normal) then do therapists record and discuss harm (which would mean acknowledging to themselves that what they are doing causes relapse) and finally do they follow up drop outs (perhaps those with 'temporary worsening of symptoms'!).

Unless they have really good and honest reporting and analysis they may well be putting their heads in the sand.

I think a lot of them don't follow up, interpret worsening as noncompliance or catastrophising of 'normal setbacks', or just hear what they want to hear. Whenever you improve, that's down to them; whenever you worsen, that's down to you.

Is there a general assumption in medicine, that in terms of the symptoms being treated, the worst effect on those symptoms the intervention can have, is no effect at all? And that any harms resulting from the intervention will therefore not include worsening of symptoms being treated?

Because this is assuredly what the BPS crowd do, and it is astonishingly ignorant and arrogant ... and indeed incredibly harmful; they blame the patient instead.

As I've said in the past here, an intervention should be monitored for all and any effects it might have, including both +ve and -ve effects on the very symptoms the interventions is treating. It should never be assumed an intervention can do no worse to symptoms than have no effect on them. True for any intervention whatsoever. Don't assume - check!

 

[Tony]

As an aside, the one thing we can be fairly certain of is that LP is too expensive to be commissioned by the NHS.

That may not necessarily be the case if it was commissioned on mass or turned into a CD or some other nonsense. Don't forget it can cure cancer MS and everything else too. That's a big patient population overall. Government contracts are lucrative because the captive audience is huge and also you don't need to constantly go chasing new customers they are just handed to you by order of the state. They would probably use NHS venues also that are already paid for by the public purse at fixed costs. Its basically easy and regular money.No doubt they would just use the existing salaried staff in the NHS also.

 

[Dx Revision Watch]

.No doubt they would just use the existing salaried staff in the NHS also.

After charging the NHS for the LP training courses for practitioners?

 

[Tony]

After charging the NHS for the LP training courses for practitioners?

Well what I meant was they could easily "train" nurses and GPs etc how to carry out the magic from the LP for example and get them to deliver it in groups of large people or in a five minute sessions one to one, just like they deliver CBT. As I understand it often they don't use degree level Counsellors now they have their own 6 week training course in becoming a "CBT therapist". They had a massive advertising drive for their course a few years ago looking to "train people to become NHS accredited CBT therapists".

I am pretty sure Phil Parker would sell them the licence to his copyrighted magic for a couple of million quid, he wouldn't need to bother with the pyramid selling scheme anymore or maybe he could continue to it on a moonlighting basis privately on top.

 

[rvallee]

Not sure if someone is keeping track as he's finding a lot. Keith Geraghty is poring through the submissions and it's basically like shooting quackery in a barrel. Honestly this may just about be the most incompetent set of contributions ever put together by professionals in an official capacity. They are thoroughly confused and ignorant of every single issue and make every point to that effect, just dripping with ignorance.

How these people actually got the idea that they know anything about this is incredible. If this were a contribution of climate scientists about climate change, to get the same degree of ignorance would need them to be written directly by industry lobbyists, emphasizing solar activity or other factors and rejecting any statement of human activity being a factor.

In a way it's good that this is all public record. It will be an incredible lesson in hubris, if someone ever gets the idea that learning lessons from failure is a good thing to do.

 

[adambeyoncelowe]

Not sure if someone is keeping track as he's finding a lot. Keith Geraghty is poring through the submissions and it's basically like shooting quackery in a barrel. Honestly this may just about be the most incompetent set of contributions ever put together by professionals in an official capacity. They are thoroughly confused and ignorant of every single issue and make every point to that effect, just dripping with ignorance.

How these people actually got the idea that they know anything about this is incredible. If this were a contribution of climate scientists about climate change, to get the same degree of ignorance would need them to be written directly by industry lobbyists, emphasizing solar activity or other factors and rejecting any statement of human activity being a factor.

In a way it's good that this is all public record. It will be an incredible lesson in hubris, if someone ever gets the idea that learning lessons from failure is a good thing to do.

And there's the fact that RCPsych completely misused their references. Nearly every one said the opposite of what they claimed, or had nothing to do with ME. It's either ignorance, incompetence or deceit. Possibly all three.

 

[Kitty]

Nearly every one said the opposite of what they claimed, or had nothing to do with ME. It's either ignorance, incompetence or deceit.

They're not used to people actually checking their homework, are they? Can't decide whether it's hilarious or just terrifying.

 

[Solstice]

They're not used to people actually checking their homework, are they? Can't decide whether it's hilarious or just terrifying.

Terrifying.

 

[Suffolkres]

They're not used to people actually checking their homework, are they? Can't decide whether it's hilarious or just terrifying.

That's because they think that the only people who are qualified to check their homework are themselves (or their mates!)

 

[Robert 1973]

I just blogged about the stakeholder submissions here, specifically focused on the Royal College defending the Lightning Process:

https://thesciencebit.net/2021/10/3...tic-processing-as-legit-treatment-for-me-cfs/

Edited to add this from Wikipedia about Simon Singh:

On 19 April 2008, The Guardian published Singh's column "Beware the Spinal Trap",[33][34] an article that was critical of the practice of chiropracticand which resulted in Singh being sued for libel by the British Chiropractic Association (BCA).[35] The article developed the theme of the book that Singh and Edzard Ernst had published, Trick or Treatment? Alternative Medicine on Trial, and made various statements about the lack of usefulness of chiropractic "for such problems as ear infections and infant colic"

 

[Hutan]

"Simon Lehna Singh, MBE (born 19 September 1964) is a British popular scienceauthor, theoretical and particle physicist whose works largely contain a strong mathematical element. His written works include ... Trick or Treatment? Alternative Medicine on Trial[10] (about complementary and alternative medicine, co-written by Edzard Ernst) .... In 2012 Singh founded the Good Thinking Society,[12] through which he created the website "Parallel" to help students learn mathematics.

Singh has also produced documentaries and works for television to accompany his books, is a trustee of the National Museum of Science and Industry, a patron of Humanists UK, founder of the Good Thinking Society, and co-founder of the Undergraduate Ambassadors Scheme."

Patron of Humanists UK.... Heidi Nicoll (until recently CEO of Emerge, the Australian ME/CFS organisation) is now CEO of Humanists Australia. Heidi would be well across all of the issues, and Simon might already know (of) her.

crosspost

 

[Robert 1973]

This is Michael Marshall who Singh shared Brian’s blog with:


This is the Good Thinking Society that he tagged:
https://goodthinkingsociety.org/

Of course it was Jim Al Khalili who did that sycophantic The Life Scientific interview with SW. And I believe the SMC was supportive of Simon Singh when was he was sued by the BCA. I hope personal connections and loyalties won’t cloud their judgment and prevent them digging deeper or speaking out, as appears to have happened so often before.