Dr David Tuller: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline

[Countrygirl]

https://www.virology.ws/2021/10/18/...-MVmgcwVWE14K19khImbMgMhA4F1qcZ40TTKvUIWsFuB0

Trial By Error: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline
18 October 2021 by David Tuller Leave a Comment

By David Tuller, DrPH

Two months ago, the UK’s National Institute for Health and Care Excellence (NICE) abruptly delayed publication of its new ME/CFS clinical guideline under fierce objections from the GET/CBT ideological brigades and their minions. Today (Monday, October 18th), the agency hosted a meeting to allow these powerful dissenters from some of the British medical associations grandly known as “royal colleges” to present their case, however stupid and unwarranted that case might be.

These esteemed parties apparently found it inconceivable and unacceptable that the main evidence for their purportedly “evidence-based” interventions was dismissed by NICE as being of “very low” or, in some cases, merely of “low” quality–an assessment reflected in the guideline’s rejection of the long-standing standard-of-care. Some GET/CBT brigadiers accused the guideline development committee of being over-influenced by irrational patients—even though only five patient representatives sat on the 21-person body. Some news organizations, even at this late date, accepted this sort of nonsense as legitimate scientific argumentation.

Professor Michael Sharpe, eminent PACE author and one-time Trial By Error commenter (!!!),

I made this comment under David's post on Facebook:

Other reports that I received from a very reliable source were not this positive, unfortunately. GET harms were not accepted and my informant thinks that while the name will be dropped it will continue under the name Activity Management. Until the RCs and their members accept that GET actually does harm patients, we are not out of the woods.

My source strongly disagreed with the MEAction report where they claim that the harm inflicted on patients was acknowleged. I was reliably informed this did not happen.

People did not accept the harm caused by GET, although my contact tried to raise it, but had no support.

 

[Inara]

How come that MEAction and your source say opposite things?

Honestly, it all sounds too good to be true. Also, if everybody agreed what was all the fuss about...Sure, there may have been efforts behind the scenes. As I said in another thread I may be too negative.

 

[Countrygirl]

As someone else observed, they had different agendas, perhaps. Not all there has personal experience of the severity of the harm inflicted on ME patients nor how extensive it is. Some were pleased that the term GET is considered so toxic it is to be dropped. That does not mean that it will not be used under a new label like Activity Management. The older, wiser, and more experienced ME reps. are more aware of the undercurrents at work. There was no acknowledgment by the meeting that GET caused widespread and serious harm. That is a crucial step. Acknowledging that the term is 'toxic' is not the same thing at all.

Everyone seems to think they had a successful meeting which was NICE's goal. Invest wasn't invited, remember, and they would certainly have pushed for a recognition that GET is not just unpopular but harmful. As NICE seem to have attained their goal, and most seem happy with the outcome, the guidelines should be published now.

We, meanwhile, have to remain on our guard that GET isn't being used under another label, which, frankly, seems likely, although the notion that deconditioning causes ME is retired.

In short, everyone could feel they had won a small victory, which was the intention.

 

[Inara]

Thank you @Countrygirl!

I personally think the BPS proponents were relatively quiet because they found their solution of how to proceed with their agendas. I agree they will probably proceed with new names, a strategy psychiatry has used for decades. Or: "They speak with a forked tongue".

Also, it may be a case of "unexperienced in politics" vs. "vised in politics"? Manipulation. E.g. I mean sth. I know from clinical psychologists: When they sense resistance, they create a comfortable atmosphere in order to loosen up the tongue and the will. I.e. someone is making you believe you get what you want (this is good for you) while, in fact, you don't.

 

[nerd]

Well, they can certainly try it. However, if anyone was to force this therapy onto a patient, I think it's likely that a court wouldn't bother so much about terms but what these terms really mean. If the recommendation says that GET can be harmful, and they try a slightly similar thing without any positive evidence, they basically try an unproven therapy that is likely to cause harm.

Until now, they at least had some evidence for GET to back them in their reasoning. It was weak manufactured evidence but it was something they could use as a shield. "There's no other treatment, so let's use this harmful treatment because there's a tiny chance that it works." Well, this argument won't hold anymore. They have to start with zero evidence and until they manufacture sufficient new evidence for the next recommendation, the biomedical community will provide their own therapies. This makes psychiatric centers for ME redundant and the NHS can waste their money in different ways.

 

[BrightCandle]

I have no benefit of the doubt left for these people. They do not have the skills to investigate pwME, there is no use for physios and psychologists in research into a biological systemic disease. There is no cross training possible.

 

[Bronc]

https://www.virology.ws/2021/10/18/...-MVmgcwVWE14K19khImbMgMhA4F1qcZ40TTKvUIWsFuB0

Trial By Error: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline
18 October 2021 by David Tuller Leave a Comment

By David Tuller, DrPH




I made this comment under David's post on Facebook:

Other reports that I received from a very reliable source were not this positive, unfortunately. GET harms were not accepted and my informant thinks that while the name will be dropped it will continue under the name Activity Management. Until the RCs and their members accept that GET actually does harm patients, we are not out of the woods.

My source strongly disagreed with the MEAction report where they claim that the harm inflicted on patients was acknowleged. I was reliably informed this did not happen.

People did not accept the harm caused by GET, although my contact tried to raise it, but had no support.

https://www.virology.ws/2021/10/18/...-MVmgcwVWE14K19khImbMgMhA4F1qcZ40TTKvUIWsFuB0

Trial By Error: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline
18 October 2021 by David Tuller Leave a Comment

By David Tuller, DrPH




I made this comment under David's post on Facebook:

Other reports that I received from a very reliable source were not this positive, unfortunately. GET harms were not accepted and my informant thinks that while the name will be dropped it will continue under the name Activity Management. Until the RCs and their members accept that GET actually does harm patients, we are not out of the woods.

My source strongly disagreed with the MEAction report where they claim that the harm inflicted on patients was acknowleged. I was reliably informed this did not happen.

People did not accept the harm caused by GET, although my contact tried to raise it, but had no support.

Here is my comment below David's article on the Virology Blog:

I really don’t share the optimism of all those privileged enough to be invited to this completely unnecessary meeting whose genesis lacked any kind of transparency.
This is a not day of celebration.

I spoke to my GP about the new guideline and he agreed with me that it will make zero difference to my life. The years tick away and my illness gets worse. Where is the commitment to substantially increase the funding for treatments/research into this biomedical disease?

The new guideline, even if it excludes any mention of GET merely takes us back to 2007, which in itself was very inadequate. So no I won’t be one of those preaching hopium about this meeting.

The new guideline is still way behind the science on my illness. One can hope that progress in research being conducted in the US and other countries may one day drag the UK medical establishment kicking and screaming into the 21st century when it comes to ME.

I recently interviewed Dr.William Weir and noted in our conversation that:

“Dominant forces within the U.K. medical establishment seem to have given political support and priority in research funding to the psychiatric diagnosis and treatment of patients with ME/CFS.

This appears to have been supported, with some notable exceptions, by the majority of parliamentarians who seem to have been largely indifferent to the plight of citizens afflicted with ME/CFS.

Over the years, they have apparently ignored both the recommendations of the Chief Medical Officer’s 2002 report into ME/CFS as well as the recommendations of the 2006 Gibson Inquiry into ME/CFS. ”

Dr.Weir’s reply to my observation was:

“The adherence of some members of the medical establishment to [the use of] GET for ME/CFS is reminiscent of the use of bloodletting in cholera.

In both cases, dogma is the driving force. Funding efforts for proper scientific (i.e. non-psychological) research into ME/CFS has been hampered by such dogma.”

Other reports based on information supplied by a delegate to the meeting suggest that the harms of GET were not accepted by the RT. Plus while the name GET maybe dropped it may continue in another form under the name Activity Management.

Final point. During the research for my PhD thesis it became abundantly clear that ordinary people only win improvements in their lives by taking collective action together. You don’t win improvements/reforms by having cosy chats with dogmatic elites who, as George Carlin once famously said, really don’t give a damn about you.

 

[SWAlexander]

The dogma would end quickly if some members of the medical establishment become sick with ME/CSF.

 

[BrightCandle]

The dogma would end quickly if some members of the medical establishment become sick with ME/CSF.

There are plenty of doctors who have become permanently disabled by the disease and it hasn't changed a thing. Had Boris Johnson or someone who "matters" been taken down by it and then tortured into a severe state by GET then things would likely be different, but until such a time as that happens to someone who isn't easy to just dispose of there really isn't any amount of evidence or body of people enough to throw on this alter of suffering with no help.

 

[SWAlexander]

There are plenty of doctors who have become permanently disabled by the disease and it hasn't changed a thing. Had Boris Johnson or someone who "matters" been taken down by it and then tortured into a severe state by GET then things would likely be different, but until such a time as that happens to someone who isn't easy to just dispose of there really isn't any amount of evidence or body of people enough to throw on this alter of suffering with no help.

Maybe they need to be reminded of the Hippocratic Oath?

 

[andyguitar]

Until the RCs and their members accept that GET actually does harm patients, we are not out of the woods.

Not much chance of them doing that as it would open the door for mass legal action.

 

[BrightCandle]

Maybe they need to be reminded of the Hippocratic Oath?

They don't take it anymore or so I hear.

 

[nerd]

The dogma would end quickly if some members of the medical establishment become sick with ME/CSF.

You'd be surprised but they are treated just the same. Doctors are the worst patients they say (because they know things). There's even a condition called the medical student syndrome. So it's not surprising that such a - let's call it experience - sticks in their heads like it applies to everything and everyone. The "patient who knows medical stuff = bad" attitude doesn't apply to non-medics only; even doctors are affected, because they can't prescribe therapies for themselves in most countries.