NICE pauses publication of updated guideline on diagnosis and management of ME/CFS
nice.org.uk/news/article/nice-pauses-publicat...
nice.org.ukPosted Aug 17, 2021, 2:37 PM UTC
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nice.org.ukFor those of you in the UK, email your Member of Parliament.
You have to express your outrage otherwise nothing will change.
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Yes. And let NICE know your opinion on Twitter https://twitter.com/NICEComms. Send them an email demanding more transparency [email protected]
They're clearly the type of organisation that bows to pressure, so as people who understand ME let's put pressure on them.
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Done.
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Any chance we can collectively come up with a letter template, or start a petition? I tried to write something to my MP but I'm honestly just too emotional and tired to finish it coherently and really put the point across. I imagine many others are the same.
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Here is one petition:
Don't let vested interests perpetuate harmful treatments for ME/CFS!
If you are struggling (understandably) to write an email to your MP, I find it's sometimes easier to cut and paste from other sources.
For example, the ME Association and Invest in ME have put out statements that you could just copy a few sentences from. Or you could link these statements in your email and tell your MP that you are too ill to write much.
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This is a great suggestion
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Great statement from Invest in ME:
It deserves a full scale inquiry into the role of NICE and those who are really controlling the agenda with regard to this disease.
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Oh please, let it backfire!
Let us help it backfire!
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However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
tl;dr: Doctors who have staked their reputations on the effectiveness of GET have threatened to pick up their ball and go home if the other players won't agree to their rules.
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this is literally insane. i wish i could tell all the doctors and lobbyists involved in this to get fucked. excuse my language but i think it’s appropriate
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[deleted]
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Argh! Don’t they realize that this makes the whole thing look political and less legitimate? It’s all fanning the flames of the “controversy” in the media. Release the damn evidence-based guidelines just like you do for every other disease. Then work on doctor education. At least then patients would have some recourse if doctors aren’t following the guidelines.
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"Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps."
NICE should spit out: who raised what issues?
"...we have not been able to produce a guideline that is supported by all."
Was that EVER a possibility?
"However, unless the recommendations in the guideline are supported and
implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need."
Like...now?
True professionals listen to evidence and patients, those who do not hardly deserve to be called professionals.
To first delay for half a year, then "pause" -the day before publification- with a nonsensical press statement, this scandal need public scrutiny.
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Exactly. So many things just does not make sense. It’s just blatantly obvious that someone is pulling the strings.
They literally acknowledged that the current treatment of patients is BS. Yet they won’t publish it because those stubborn/corrupt doctors and psychiatrists won’t accept it
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I'm not angry, just disappointed.
But that's because I don't have the energy to be angry. I really thought we were getting to the end of GET.
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Ah right. So they "paused" guidelines preferring GET when there was disagreement from patients, did they? Did they fuck.
There is something deeply, deeply rotten at play here, and the losers are going to be patients, again.
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BBC article
https://www.bbc.co.uk/news/health-58241864
includes this from presumably one of the people stopping the publication:
Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.
There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.
Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.
We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication."
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This is the money comment and should be at the top.
I wonder what the “group of patients” who have benefited is? The 1% who were having an episode and not an ongoing debilitating systemic disease? Great, then include a byline that, for a tiny portion of patients, who don’t fit the actual diagnostic criteria for MECFS, these approaches might be appropriate under some circumstances. Then publish the rest as it was, based on a rigorous scientific review.
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Yeah, wow, it’s a horrible statement from the doctor. NICE literally spent years on the guidelines finding NO evidence nor reason for GET/CBT. But because this dude says it helps for some they pause everything? It’s messed up.
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GET benefited me a ton. I have both a long covid and a CFS diagnosis, and I’ve done almost 50+ PT sessions this year. This is one of those things that makes me think long covid manifests itself slightly differently than non-covid-induced CFS. I don’t think my experience is typical for most people with CFS.
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… do you have post-exertional malaise as a symptom? I’d be surprised if you got a CFS diagnosis without it. Post-exertional malaise is what keeps the rest of us from working out. Doctors (and most people, honestly) don’t understand PEM in the slightest.
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I get PEM after cognitive exertion not physical. I made that really clear to the doctor and I still got the diagnosis. I also have multiple-day crashes/relapses (which the doctor called “major PEM episodes” in her notes) which get triggered by things like acupuncture, massage, and plane flights.
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If something has 'significantly benefited many patients' they should be able to put together an 'evidence base' surely?
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Considering that many doctors will believe that rapid taper benzo withdrawal is safe because of studies where-in it's safe and doesn't result in PAWS (which can last up to 3.5+ years) in about half of the people studied--forgetting, of course, the rest of the percentage of people--and then blanket prescribe a rapid taper to their patients (or an even more dangerous cold turkey withdrawal, which has killed people,) the fact that exercise may benefit people with mild/very mild ME/CFS is not even worth including in these guidelines. (It is furthermore highly questionable whether it's even directly treating ME/CFS, and not just treating secondary health issues that come with the low-activity lifestyle.)
Clinicians are simply not competent enough to include even this tiny bit of nuance in a guideline, as sad as it is to say.
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Since NICE are still very much open to receiving raised issues, here's their tweet about the "pause":
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I expected another delay, honestly, but I cannot believe that their excuse is that they can't come up with something that's "supported by all". It's staggering that they can try to claim that as a reason to leave us with the existing guidance.
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Wow.. that's pretty fucked up..
I wonder if the sudden influx of Long Covid into the mix has rattled cages among the 'it's all their head' brigade...
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All the opposition to the NICE guideline wasn't based in criticism of the methodology that NICE used, it was based in the opinions of clinicians and opposition to the involvement of patients.
The medical bodies that are opposing this guideline are not doing it in the name of science, they're doing it in the name of self interested clinicians and and views of clinicians. This is a shocking betrayal to the principles of science by some of the most influential medical bodies in the world.
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Going through the scientific literature--and particularly the history of science--is extremely depressing. Particularly for people with a philosophical education. That our culture worships the hunk of garbage that constitutes quite literally most scientific output is at this point just dangerous for the future.
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Unfuckingbelievable and once again back to authoritarian medicine . I can' t.
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recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
Is there a more bizarre, corrupt argument than "financial stakeholders don't like the decision" so we're with-holding guidelines.
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They don’t even try to hide it. I’ve never seen anything like it.
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So... indefinately postponed? Brainfog so can't tell, sorry. Dissapointing, but not surprised.
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Fuck. It sounds like they halted the publication so they can water down the truth about GET/CBT not being effective. This won't affect me directly but it will harm people in the UK, and keep the science from moving forward globally.
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Really did not need this stress today.
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Christ sake
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Some dark shit has happened behind the scenes once again.
Yes, it looks like a massive dummy spit from doctors who would rather tell patients that their symptoms are all in their heads rather than being forced to treat them like human beings.
Disgusting.
I wonder what the final guidelines actually were before they got persuaded to change their mind.
If they were like the draft in November 2020, one of the main changes were that graded exercise and CBT should not be offered for M.E.
NICE has had months to hash it out and decide on a response. That they postpone even longer is simply caving to pressure. It’s just a sad sad state of affairs. Needs huge press coverage in support of the patients
Word is they are pretty much intact from the draft last year.
It ain't rocket science. Money talks...