NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Sean said:
Wiborg (2010)

https://pubmed.ncbi.nlm.nih.gov/20047707/

1. Summary: CBT does not increase physical activity in CFS patients, as measured by actigraphy. In particular, the self-report fatigue and actigraphy results did not correlate, so there is simply no possibility of CBT having a causal effect on activity levels.

2. It came out before PACE (Feb 2011).

3. @Tom Kindlon asked the PACE authors why they dropped actigraphy for the outcome (after collecting a full set of baseline data). Their answer (on the public record, in a formal journal), was that the patient organisation involved in the trial (Action for ME) had agreed/advised (?) that the actimeters themselves were "too much of a burden on patients".

Actimeters are deliberately designed to be as unobtrusive as possible, and weigh less than 50gm (1.75 oz). I have a light short-sleeved summer cotton shirt that weighs 151gm. Wearing that is no burden.

4. Subsequently, information that came out of an FOI by @JohnTheJack revealed that the reason PACE gave to the Trial Steering Committee (?) for dropping the actigraphy was that results of the Wiborg study were negative, they did not support an effect from CBT. PACE argued that they should only be required to use measures that gave positive results.

Let that sink in. They are claiming to be exempt from falsifiability. To be allowed to use a methodology that can never prove they are wrong.

And so here we are...
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I've worn an actimeter before my treatment with CBT/GET and it wasn't a bother at all. The thing got hooked up and the only time I had to mind it was whilst showering. This was in 2003, I'd imagine the devices have gotten better and even less intrusive over time, but I'm not sure about that.
 
From Adam's Broken Battery videos

@ABrokenBattery
· 29 Jun
Dr David Strain talking at today's APPG. There are 3-4 types of Long Covid, one is very similar to ME/CFS. The ME/CFS service has 'probably been the most underfunded'. Graded Exercise only recently been removed, moving to pacing. Expects this area will be the 'biggest problem'.

If someone can upload the video attached to the above tweet Dr David Strain says at around 1.40 mins that only recently the RCGPs had updated their guidance on ME to remove GET/CBT. (paraphrase)

I wondered at the time about yhe RC of Physicians.



Video also linked at doctors with ME site:



[URL='https://mobile.twitter.com/DoctorsWithME']Doctors with M.E.

@DoctorsWithME[/URL]
·
29 Jun

@DoctorsWithME
Honorary Fellow and BMA Long Covid Lead, Dr. David Strain, at today's All Party Parliamentary Group on Corona Virus
 
Barry said:
Merged thread

Cambridge ME patients fear 'dirty tricks' at NICE will halt vital review of treatment guidelines
A game-changer for the condition review is due to be published next week

https://www.cambridge-news.co.uk/news/cambridge-news/cambridge-me-patients-dirty-tricks-21290047

The individual comments re GET and its consequences are well worth reading. Lots of ads but if you can cope with reading the content despite them, then it is worthwhile.
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Sly Saint said:
I don't think the article is very helpful as a lot of it preempts the publication on the 18th; ie it says that patients fear that NICE will stop the review, and one of them has set up a petition already :thumbsdown:
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I take it all back.

the petition is here:

https://www.change.org/p/national-i...erail-the-review-of-nice-guidelines-on-me-cfs
ME/CFS strikes 1 in 250 of us. It is a devastating illness, more disabling than angina or multiple sclerosis. Three quarters of sufferers are too ill to work or pursue education; a quarter are house- or bed-bound. Hundreds of thousands of lives are ruined; people who could otherwise be contributing to their communities are dependent on family or on the state. The cost to the economy is estimated to be £6.4 billion per year. Most who develop it never recover completely, although careful lifestyle management can help significantly.

Since 2007 the NICE guidelines on the treatment and care of people living with ME/CFS have been based on a flawed model of psychological causation - 'It's all in your head'. But medical research both before and since has produced plentiful evidence that the illness is very physical indeed. The body's energy production is seriously impaired; blood flow, particularly to the brain, is disrupted; the autonomic nervous system malfunctions; its presence can be detected by blood tests. The condition typically onsets after a viral infection, and it is increasingly clear that "Long COVID" involving crushing fatigue, a worsening of symptoms after exertion, and cognitive impairment ("brain fog") is ME/CFS produced by the SARS-COV-2 virus.

The old NICE guidelines prescribe cognitive behaviour therapy (CBT) and graded exercise therapy, or GET. This is based on the theory that one has to correct sufferers' "erroneous" belief that they are really ill, and an escalating programme of physical exertion to overcome supposed deconditioning. While CBT, properly applied, can support the well-being of chronically-ill people, patient surveys show that it does not relieve ME/CFS.

GET is more pernicious. One of the cardinal symptoms of ME/CFS is post exertional malaise (PEM): the illness is made worse by exertion. GET, involving constantly-escalating exertion, could have been tailor-made to worsen the illness!

NICE is now revising its guidelines. In the recently-published version, GET is specifically excluded from treatment, and CBT is no longer portrayed as a cure. The committee of 16 health professionals and 5 lay members painstakingly reviewed the evidence before coming to their conclusions.

So far, this represents enormous progress. Sufferers may no longer be told their illness is imaginary, nor offered "treatments" which either do not treat the illness or make it worse.

However a coterie of professionals, mainly psychiatrists, is so attached to the discredited psychological theory that they refuse to accept the changes: three members of the NICE committee have resigned. An egregious article in the British Medical Journal has suggested that the NICE committee is dominated by patients who are anti-science and ignoring the evidence. In fact, as painstaking research by NICE has shown, the evidence for GET is 'poor or very poor', as is the evidence that CBT cures ME/CFS.

The timing of the resignations and the article is not coincidence. It is an attempt to discredit NICE's work on ideological grounds. It would be a bitter blow if ME/CFS sufferers, gas-lighted for decades, should be robbed of justice at the last moment. The revised guidelines are due for release later this month - support our cause and vote to make sure they go ahead!
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Sorry if this has already been said/asked, (too many posts and Tweets to keep track of this afternoon).

I wonder if the three BPS members that quit, along with Dr CS who was removed, have made the voting process unfeasible..and the weasel words that NICE put out is covering up for this? Could the three have worked out that it would destabilise the voting for the final version and making a play to screw things over at the 11th hour and succeeded.. #conspiracytheories
 
Fainbrog said:
Sorry if this has already been said/asked, (too many posts and Tweets to keep track of this afternoon).

I wonder if the three BPS members that quit, along with Dr CS who was removed, have made the voting process unfeasible..and the weasel words that NICE put out is covering up for this? Could the three have worked out that it would destabilise the voting for the final version and making a play to screw things over at the 11th hour and succeeded.. #conspiracytheories
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Most NICE guidelines don't use voting. It's consensus or nothing.
 
Thinking it over, a bit worried of talk of legal proceedings if dont follow guidelines as we dont want legal proceedings if docs dont follow the current ones so important for them to use clinical judgment.
too crashed to follow through so just an observation
 
Others already know this stuff but I found this article on bloodletting from Wikipedia enlightening. There’s a reference to a lecture in 1838 at the Royal College of Physicians.

https://en.m.wikipedia.org/wiki/Bloodletting


Can’t extract or link to specific paragraphs but there’s a sentence I’m going to quote when I’ve written it down

“Some physicians resisted [Charles Alexandre] Louis’ work
“because they were not prepared to discard therapies validated by both tradition and their own experience on account of somebody else’s numbers””.
Quote from Rangachari 1997 Evidence based medicine new Canadian wine in old French bottles.
Sorry for the lightbulb moment.

this is absolutely what the Royal Colleges are doing right now
 
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NelliePledge said:
Others may already know this stuff but I found this article on bloodletting from Wikipedia enlightening. There’s a reference to a lecture in 1838 at the Royal College of Physicians.

https://en.m.wikipedia.org/wiki/Bloodletting


Can’t extract or link to specific paragraphs but there’s a sentence I’m going to quote when I’ve written it down
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Whoa:

"Nevertheless, in 1838, a lecturer at the Royal College of Physicians would still state that "blood-letting is a remedy which, when judiciously employed, it is hardly possible to estimate too highly", and Louis was dogged by the sanguinary Broussais, who could recommend leeches fifty at a time. Some physicians resisted Louis' work because they "were not prepared to discard therapies 'validated by both tradition and their own experience on account of somebody else's numbers'."

Bloodletting was used to treat almost every disease. One British medical text recommended bloodletting for acne, asthma, cancer, cholera, coma, convulsions, diabetes, epilepsy, gangrene, gout, herpes, indigestion, insanity, jaundice, leprosy, ophthalmia, plague, pneumonia, scurvy, smallpox, stroke, tetanus, tuberculosis, and for some one hundred other diseases. Bloodletting was even used to treat most forms of hemorrhaging such as nosebleed, excessive menstruation, or hemorrhoidal bleeding."

The bloodletting empire!
 
Wonko said:
I discovered a few years ago that the NHS still uses bloodletting, only not with so many leeches these days.

These days they stick a needle in your arm and draw out up to a liter of blood at a time, possibly several times a week, for conditions like Haemochromatosis.

https://www.nhs.uk/conditions/haemochromatosis/
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They haven’t got round to making up a CBT programme for that yet
 
NelliePledge said:
They haven’t got round to making up a CBT programme for that yet
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LOL :)

From the website:

  • phlebotomy – a procedure to remove some of your blood; this may need to be done every week at first and can continue to be needed 2 to 4 times a year for the rest of your life
  • chelation therapy – where you take medicine to reduce the amount of iron in your body; this is only used if it's not easy to regularly remove some of your blood
I'd be quite up for a bit of bloodletting and leeches myself but is chelation therapy actually a useful treatment? Have only seen it in dubious and dangerous contexts (more dangerous than bloodletting!)
 
Update: This was cancelled

MSEsperanza said:
Daily Digest: Chat to NICE ME/CFS guideline committee members

(There are only 100 spaces to attend so register now!)

After too many years of waiting, the final version of the new ME/CFS guideline developed by NICE will be published on the 18th August 2021!

On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on this guideline.

Register to attend
We’re excited to welcome:
  • Adam Lowe, lay member and person with ME
  • Caroline Kingdon, Research Nurse and Research Fellow working with the UK ME/CFS Biobank
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(It seems the website doesn't allow to copy text -- further info see there.)
 
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Probably irrelevant, but I wonder why the BMJ is a stakeholder. Why a journal? Is it also for other guidelines?

(Apologies if this is the wrong thread and a probably irrelevant question anyway -- just trying to tidy up my folder of draft forum posts and not up to search the NICE pages myself... )
 
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