Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

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Somehow between first reading it and opening it again to copy a quote, it has been made available only to members.

But it includes a quote on how it's significant because of Long Covid... by mentioning how fatigue is also common in LC. And it reminds me of drug ads in the US with the "this is your brain on drugs" and just replace "psychosocial" in my mind. I mean it's not as if details matter here or anything. Blergh.
 
rvallee said:
Somehow between first reading it and opening it again to copy a quote, it has been made available only to members.

But it includes a quote on how it's significant because of Long Covid... by mentioning how fatigue is also common in LC. And it reminds me of drug ads in the US with the "this is your brain on drugs" and just replace "psychosocial" in my mind. I mean it's not as if details matter here or anything. Blergh.
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Yes, I found this also. I was able to access the page twice, then it asked for a log in or registration. I do have a registration for PULSE, but today, it would not recognise either my email address or my password.
 
from the pulse article
The briefing said: ‘The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise intolerance theories, should not be offered to people with ME/CFS.
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my bolding

shouldnt that be avoidance not intolerance...?
 
Dx Revision Watch said:
Yes, I found this also. I was able to access the page twice, then it asked for a log in or registration. I do have a registration for PULSE, but today, it would not recognise either my email address or my password.
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I, and I suspect several others did some twitter responses which would not have gone down well about misleading chronic fatigue in title.. So I think they will reserve it for subscription acolytes only.....
 
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Suffolkres said:
I, and I suspect several others did some twitter responses which would not have gioe down well about misleading chronic fatigue in title.. So I think they will reserve it for subscription acolytes only.....
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I can read it just fine. Am also curious about the comment that was removed, if someone would be able to pm it to me I'd be grateful. Or just the general gist of the comment. There's still a comment below it that I can't make heads or tails of.
 
Solstice said:
I can read it just fine. Am also curious about the comment that was removed, if someone would be able to pm it to me I'd be grateful. Or just the general gist of the comment. There's still a comment below it that I can't make heads or tails of.
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I can’t now access the article without registering, though accessed it before.

However I could beneath the various login windows see there is now just one comment. Is this the one you meant @Solstice that makes little sense?

I’d love to understand what the disagreement was. Without graded exercise is this a syndrome without any definitive diagnostic tests, defined pathological processor effective treatment.
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Suffolkres said:
I, and I suspect several others did some twitter responses which would not have gioe down well about misleading chronic fatigue in title.. So I think they will reserve it for subscription acolytes only.....
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So, is Pulse using students and internships to save money?
About me

Hello! I’m a freelance writer and journalist, specialising in news and features.

I am currently studying MA Journalism at Goldsmiths College, University of London.

I have written for a range of publications, across both digital and print, including Business Insider and Guardian Weekend.

Please feel free to contact me at caitlintilley.freelance@gmail.com
 
Solstice said:
I can read it just fine. Am also curious about the comment that was removed, if someone would be able to pm it to me I'd be grateful. Or just the general gist of the comment. There's still a comment below it that I can't make heads or tails of.
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It may depend on how many times you have accessed the page. I was able to view the article at least twice; the next time I viewed it a log in was requested but the site is currently not accepting my longstanding log in and password. I'll try clearing PULSE cookies and see if I can access again.

ETA: With cookies deleted I still can't see beyond the first para. But I can see just one comment (from David Jarvis).

I was able to register a number of years ago. Perhaps PULSE has since deregistered non medics.
 
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I was able to access the article, and saved a copy of it.

Only comment showing on it was this one:

"I’d love to understand what the disagreement was. Without graded exercise is this a syndrome without any definitive diagnostic tests, defined pathological processor effective treatment."
 
Sean said:
I was able to access the article, and saved a copy of it.

Only comment showing on it was this one:

"I’d love to understand what the disagreement was. Without graded exercise is this a syndrome without any definitive diagnostic tests, defined pathological processor effective treatment."
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I think there's a missing space, comma and question mark. So it should be:

"I’d love to understand what the disagreement was. Without graded exercise, is this a syndrome without any definitive diagnostic tests, defined pathological process or effective treatment?"

That makes more sense now.
 
I think that must be a different post. The original one went

" I would expect the health workforce to be 100% affected by chronic fatigue".
"Give all NHS staff a fit note for 1 month and make it patient centred".
"Hope they added in chronic fatigue from self privilege and boredom subtype",
"What is the prevalence of chronic fatigue in Africa and the sub-continent,"
"The maximum dose of sertraline is 200mg".
"THe guidelines probably suggest a trial of a holiday in Mallorca or Bali...".
"Netflix subscriptions should be offered to all unresolved and diagnostically uncertain and unfathomable cases, with some craft beer and a lifetime of opioids which can be sold on the black market, to Americans apparently".

It is unclear whether this is the work of that mythical Scandinavian race, relocated to St Petersburg. Alternatively the NHS employs a great many people. It is statistically probable that any given time some of them will be having personal crises.

The post was probably more unhelpful to its author than to the cause of the guideline.
 
Trish said:
That looks like it was written by someone who takes literally the term 'chronic fatigue' and thinks that's all we suffer from, and hasn't bothered to find out more. Another example of the harm the name CFS has caused.
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Even if it's "just" about chronic fatigue it is still incredibly ill-informed. It's what we've come to expect and have had to fight against even if we've had been given a clear cut diagnosis of M.E. and I agree cfs has muddied the waters significantly. I still don't think people with chronic fatigue should undergo this same sort of mentality. There is no indication at all that CBT or GET would work for them, if we've learned anything from PACE the opposite is probably true. Even if it wouldn't hurt a person with chronic fatigue directly, subjecting them to what we've been subjected to would still harm them indirectly by root causes not properly examined.

For clarification, not having a go at you Trish, but at the guy writing the comments and people with similar attitudes. I'm feeling a bit ranty today.
 
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adambeyoncelowe said:
I think there's a missing space, comma and question mark. So it should be:

"I’d love to understand what the disagreement was. Without graded exercise, is this a syndrome without any definitive diagnostic tests, defined pathological process or effective treatment?"

That makes more sense now.
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That does make more sense. @Sean said it all in his response.
 
Jonathan Edwards said:
There was no suggestion of any adverse changes being in the tweaks mentioned at RT and I think that is likely to hold up. I doubt anything will change over GET.
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Could NICE really change anything significantly in the already signed off guideline, without another committee review and sign off cycle? That would violate their undertaking on 4 Oct that only typos and clarifications would be accepted; anything outside the scope of that would run the risk of them being rightly accused of flouting their own process, but very explicitly this time around. So hopefully no more than clarifications already agreed at the RT.
 
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