UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Report from a meeting with the Royal College of GPs on implementing the NICE Guideline on ME/CFS

Report on a meeting held on Thursday 16th June between Forward-ME (FME) and the Royal College of General Practitioners (RCGP) to discuss implementation of the new NICE guideline on ME/CFS in primary care

https://meassociation.org.uk/2022/0...on-implementing-the-nice-guideline-on-me-cfs/

 

Talk is cheap, especially theirs. As long as their continue their blockade of the guidelines, literally the bare minimum, it's worth even less than a stack of Monopoly money.

Let's see action first, matching those words.

 

I'm not sure if this is the thread to place this in (I though there was another thread on the response to NG206, but I can't find it), but I wanted to mention the Royal College of Psychiatrists' response to the recent Moncrieff et al review (discussed here in this thread) where they find "no support for the hypothesis that depression is caused by lowered serotonin activity or concentrations".

An article in The Guardian, Little evidence that chemical imbalance causes depression UCL scientists find - Researchers question use of antidepressants, prescribed to one in six UK adults, discusses the review, where the lead author says:

The Royal College of Psychiatrists reacts to this news with:

and

I thought this was relevant to their attitude towards NG206.

1. They question findings and argue the effectiveness of treatment despite the review saying it is not evidence-based
2. They argue in favor of the treatment by referring to it being recommended by NICE.

 

This is the trend. Once you see it you can't miss it, but for the most part:

1. This is a great study, solid evidence based on science = I personally (or we, the authorities) like what this says
2. This is a biased study, not evidence-based = I personally (or we, the authorities) don't like what this says

Seriously, the entire evidence-based medicine paradigm is a giant failure, it's completely unreliable in itself because it mostly amounts to a popularity contest, it's a pseudoscience-laundering machine, it can produce completely unreliable conclusions. It needs a complete replacement and frankly most clinical evidence formed on the basis of this process needs to be downgraded until assessed with reliable methods. It's the medical equivalent of a security theater.

It's basically a ritualized version of how things were before the scientific method, it's process-heavy but that process is nothing but production value, like a terrible nonsensical movie with a huge production budget. All you can say is that it's expensive.

 

It has turned into a political gadget (there is a better word I can't reach right now), if it wasn't always intended that way.

Seems that dragging up poor evidence as 'something to cite' and banging on about nonsense personality ideas based on lame correlations as if they are fact without asking the individual what exactly happened has become the cliche of the day to get the tick in the box of 'being clever'. Basically whether it is accurate, or relevant to context is thrown out of the window because 'bla' - to 'say something' and tick the box of 'claiming evidence' - is most important. It misses the point and does the exact opposite of what it purports or infers it is.

It's like someone seeing that a recipe didn't come off and instead of sitting down and saying 'what's wrong with it, the rise or the taste etc' and asking the maker what ingredients they actually used specifically and the intricacies of what they actually did to get to the bottom of it, someone citing 'it's too hot an oven' based on some dodgy research that 42% of cakes fail if the oven was too hot got translated by aggregate methodology into 'all cakes were 42% worse due to hot ovens' and then telling the cake-maker to shut up when they say it wasn't.

We've all met people who are like that in real life, whether it is a recipe or some other doesn't matter thing you chat about and just roll your eyes - when it gets into important areas then it is a big issue. The attitude reminds me of the old 'talk to the hand not the face' attitude that I remember being 'the fun phrase' a number of years ago.

 

You hit the nail on the head so often and so eloquently. These three quotes in particular describe Cochrane to a tee

A quick search of the Cochrane Library for a review including SSRIs found this little 13 year old never to be updated yet used in 5 guidelines gem https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007954/full?highlightAbstract=ssri
Check out the declarations of interest.

 

I think they are behind the paywall? Otherwise there's this bit and it's a doozy:

Hey, if we can't trust the good executives and shareholders at tobacco companies who generously funded research into their product, who can we possibly trust?

I guess it seriously is a simple: no one. Literally no one can be trusted about anything, not even institutions built on trust. Always verify, verify and once more for good measure. Also: measure, actually measure things, if you're not measuring something real you're simply not doing serious work. Criticize, pick apart, demand, never accept the premise of a damn lie and even ordinary claims require evidence, but damn do extraordinary claims badly require vastly more.

 

no.
"Declarations of interest
BA is a member of the Primary Care group of the Future Forum and Educational Foundation funded by AstraZeneca (UK). BA is also a member of the Pharmac seminar series board. Pharmac is the New Zealand government funding agency for pharmaceuticals. BA has also been funded to a conference by Sanofi‐Aventis."

 

lmao Cochrane is an absolute joke.

Also something else I noticed in the sentence I quoted, it says that all trials were of short duration, but because of withdrawal effects, SSRIs are usually taken long-term.

Which, uh, adds up to the same: lmao Cochrane is an absolute joke. This, THIS, is the gold standard of medicine? No wonder things are FUBARed.

 

Shouldn't a joke be funny? Funny ha-ha, that is. I suppose it qualifies as funny peculiar.

 

An Update On The Scottish Implementation Of The NICE Guideline

The Scottish Government has made the decision that the NICE guideline will be implemented by updating the Scottish Good Practice Statement (SGPS) to reflect the changes in the guideline. The SGPS was published in 2010 and provided better information and guidance than the previous NICE guideline, but health professionals were unaware of it and it is now outdated. #MEAction Scotland has reservations about the effectiveness of updating the statement when it has never been widely adopted. When discussing the SGPS in the Blake Stevenson report, there is a quote from a person with ME: “I referenced it in a meeting with a GP and they had not heard of it.” We know that isn’t unusual.

https://www.meaction.net/2022/07/29/an-update-on-the-scottish-implementation-of-the-nice-guideline/

 

It would be better to have. SIGN guideline ( like NICE) as medics defer to these .
Even COVID has one
It's been talked about for years but still no sign of one ( bad pun I know)

 

Can't help but think of Dr Strangelove here: gentlemen, you can't use evidence in here, this is the evidence-based medicine room!

 

Putting this here because it's relevant to how familiar/unfamiliar NHS clinicians are with the NICE Guideline:

"Growth in NHS recruits from abroad prompts concern about over-reliance

The NHS in England is increasingly reliant on doctors and nurses recruited from outside the UK and EU, analysis has found.
Some 34% of doctors joining the health service last year came from overseas, a rise from 18% in 2014.
The government said overseas recruitment had always been part of its strategy.
But unions have warned it is an unsustainable way of recruiting in the long-term.
A total of 39,558 domestically trained doctors and nurses joined the NHS in 2020-21, which is just over 3,200 more than in 2014-15"

More at link: https://www.bbc.co.uk/news/uk-61230287

 

(From last year)
From Sheffield ME & Fibromyalgia Group:

You can find the 3-page summary <> from our Chair Carolyn about the NICE guideline for ME/CFS released in October 2021. This article was published in the Winter 2021 edition of our members' magazine.

 

This feels like it is walking back quickly in the last year I'm afraid. We've gone from 'peak' PEM and cognitive fatigue types and being understood pre-covid and guideline, to somehow in the last year all this getting slowly disappeared. And lots of brain fog nonsense coming back again. Is this covid and trying to mix the 2 - and if so is it because there are different types of covid, where there are differences with this vs ME or is it the predictable attempt of medics to do to covid the same tricks they did for ME, which sadly due to the tie means they have to do it to ME too?

This is much needed and 'job advert watch' seems to also highlight massive issues in this area. At a year in I think that ForwardME needs to do a 'stop, flag'. We can't have new posts being filled with nonsense-staff under whatever guise anymore.

If someone doesn't call it, on them trying to get away with rolling over 'business as usual and see if they stop us', the whole thing with be self-perpetuating, new staff will hinder changing layouts etc. It's time for each to submit plans on what they will become and plans for how to do that.

Staff leave and they are filling these new spaces with problems that will prevent this happening in future, rather than having a system where they'd need to ask for special dispensation only where there is a provable issue with evidence they've not done so in a way that closes off the opportunity for them to work in the right way in future.

 

At no point is there a stop, oh, this is interesting let's find out what is best for the patient by adding this to our knowledge base. I think to anyone who stands back and just has ultimate trust for that profession they should watch and look that sort of thing. But they don't, because there is just enough stigma kept, at the same time as calling 'anti-mental health' if someone questions whether the system is good enough for those looking after people with mental health (ironically) to ensure such people keep hands off from calling out.

 

From another thread:

The Journal of Neurology Neurosurgery and Psychiatry is published by the BMJ group and Alan Carson is one of the Journal's Associate Editors.