UK - NICE guideline on Long Covid

Just to confirm that we got our submission in on time. We won't be sharing it with you all yet, given the confidential nature of the draft, but once it looks like we can do so without being told off by NICE then we will (and I believe NICE will include it as part of the documentation once the guideline is published anyway).
 
Received from NICE just now.

Dear Stakeholder,

Re: NICE/SIGN/RCGP rapid guideline: management of the long-term effects of COVID-19

I acknowledge receipt of your submission and thank you for participating in the recent consultation.

Your feedback is important to us and we are extremely grateful for you taking the time to share your input, particularly in such a tight timeframe.

Please can we take this opportunity to reassure you that all comments submitted will be shared with the expert advisory panel and the recommendations reviewed in light of stakeholder feedback.

We will let you know once the final guideline has published later this month.
 
Andy said:
the final guideline has published later this month
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so this is likely to be around the deadline for submission for comments on the draft ME guideline.

Science For ME said:
deadline of 22 December.
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I'm not sure if this is a good or bad thing.
Things that may arise in the LC guideline might have some bearing on the proposed contents of the ME guideline.
I'm guessing some on the ME NICE guideline committee may have already raised this as an issue?
@adambeyoncelowe @Keela Too

(although there also might be justifiable fears of 'rocking the boat' and it having a negative effect on the final guideline).
 
I think it's probably more a case that what is in the new ME guideline should influence what goes in the long Covid guideline. We'll just have to wait and see. I can't see how the existence of long covid should or could influence the ME guideline. If people fit the diagnostic criteria for ME, they should be diagnosed with ME, regardless of what triggered it.

I think the long Covid one is meant to be temporary and amendable over shorter than normal timespans, so maybe once the ME guideline is finally published next Spring, and people with long Covid have had a chance to think about whether their guideline is useful, there may be pressure from long covid groups for change.
 
???

Besides the extreme oddity of asking him, of all people, this is a weird comment, even more so by its complete lack of context of who is giving that comment.


Long Covid: Hospital patients to get checks at six weeks

https://www.bbc.com/news/health-55352409

New guidelines written by NICE, along with its Scottish counterpart SIGN and the Royal College of GPs, list more than two dozen common long-term symptoms including breathlessness, a cough that won't go away, joint pain, muscle aches, hearing problems, headaches, loss of smell and dizziness.
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I guess those are coming out any day now.

But...

Wait...

Who's...

Talking:
One doctor welcomed the "modest" increase in NHS funding but said more needed to be done to avoid an "epidemic of post-Covid disability".

"All too often the NHS focuses on saving lives but neglects the needs of the survivors," said Michael Sharpe, professor of psychological medicine at the University of Oxford.

"We must not make that mistake this time. We need to mobilise again to reduce the risk of long-term disability in those who survived Covid-19."
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Aaah… just 8 months too late. That's the kind of thing that takes expertise to be able to predict. We were talking about it back then. The "leading researcher" has nothing to say, however.

Really, consider the hidden humiliation this represents. This man, this "leading researcher" in "chronic fatigue", who has spent much of his career working on this very topic, who has been profiled many times as a "leading researcher" in this very topic, one with such incredibly vast and advanced knowledge of it he has created powerful and effective treatments for it used around the world, commenting on the very topic he has dedicated his career and reputation to, when this very problem has reached heights catapulting it into the limelight as a generational struggle that will cost the economy dearly, right as millions of medical professionals will have to be trained to deal with this very problem this "leading researcher" with very advanced knowledge of this dreadful condition must surely have, these people ready and willing to listen to how they can better care for those poor sick people.

And he is cited as... one doctor. Not even A doctor. One doctor. Just that. Nothing more. A mere nobody mentioning this in passing for no particular reason, certainly not having to do with being labeled as a "leading researcher" on this very topic, having published numerous books, given talks and influenced clinical care around the world.

Nope. Just one doctor. Just another random nobody commenting generally about topics related to his profession. Nothing more.
 
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rvallee said:
???

Besides the extreme oddity of asking him, of all people, this is a weird comment, even more so by its complete lack of context of who is giving that comment.


Long Covid: Hospital patients to get checks at six weeks

https://www.bbc.com/news/health-55352409


I guess those are coming out any day now.

But...

Wait...

Who's...

Talking:

Aaah… just 8 months too late. That's the kind of thing that takes expertise to be able to predict. We were talking about it back then. The "leading researcher" has nothing to say, however.

Really, consider the hidden humiliation this represents. This man, this "leading researcher" in "chronic fatigue", who has spent much of his career working on this very topic, who has been profiled many times as a "leading researcher" in this very topic, one with such incredibly vast and advanced knowledge of it he has created powerful and effective treatments for it used around the world, commenting on the very topic he has dedicated his career and reputation to, when this very problem has reached heights catapulting it into the limelight as a generational struggle that will cost the economy dearly, right as millions of medical professionals will have to be trained to deal with this very problem this "leading researcher" with very advanced knowledge of this dreadful condition must surely have, these people ready and willing to listen to how they can better care for those poor sick people.

And he is cited as... one doctor. Not even A doctor. One doctor. Just that. Nothing more. A mere nobody mentioning this in passing for no particular reason, certainly not having to do with being labeled as a "leading researcher" on this very topic, having published numerous books, given talks and influenced clinical care around the world.

Nope. Just one doctor. Just another random nobody commenting generally about topics related to his profession. Nothing more.
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The BBC reported is being extremely disingenuous here calling him a doctor and not a psychiatrist. Why the omission? And listing him as professor of psychological medicine, what is that?
ps There are some amazing psychiatrist's out there, why is it always the same old, same old?
 
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NICE have released their "COVID-19 rapid guideline: managing the long-term effects of COVID-19", see https://www.nice.org.uk/guidance/ng188

We were distinctly underwhelmed by their original draft, and on a quick scan of this, not much has changed. It would seem they are determined to steer clear of acknowledging any possible connection with any other post-viral syndrome and/or ME/CFS.

Text of our submission is integrated into the same document as everybody else who commented on the draft, so for ease of reading I've attached a copy of our submission (you will need to be a forum member to access it).

The panel list and declaration of interest, https://www.nice.org.uk/guidance/ng188/documents/register-of-interests, reveals that our friend Trudie Chalder is one of the 'experts'.
 

Attachments

Thank you @Andy and all those involved in engaging with this on the behalf of pwME.

It really doesn't get boring these days.

I've not been able to have more than a very quick glance on the draft and an even quicker glance on your submission and the now released guidelines-- so just want to say thank you for your work on this.

I'm very concerned that all the progress made with the ME guidelines thanks to a very "evidence-based" NICE guidelines committee could be counteracted in the long term by the people NICE chose to work on the 'LC' guidelines.

So would be happy if anyone could give a short summary.

(Edited for clarity.)
 
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MSEsperanza said:
I'm very concerned that all the progress made with the ME guidelines thanks to a very "evidence-based" NICE guidelines committee could be counteracted in the long term by the people NICE chose to work on the 'LC' guidelines.
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I don't think you need to worry. The LC team think they can breeze in and carry on the old story. They will have no impact on the ME committee decision and for LC their plans will fall apart quickly. For one thing there will be no staff to do rehab, what with there being no staff to run ordinary hospital care at present.
 
Not one mention of post-viral illness / syndrome / fatigue in the whole guidelines. It's as if a whole body of research—and the documented experience of millions around the world who became chronically ill after as virus—just don't exist, and didn't exist until Covid-19 came along.
 
Clearly covid 19 is not a virus then.

As otherwise it would be impossible to legitimately not mention that an ongoing illness, after a viral infection, was post viral.

And as everyone involved in this is clearly a good apple, and wearing a white hat, that means that covid 19 is not a virus.
 
Just conducted an interesting experiment. Type 'professor of psychological medicine' (with the quote marks) into google and see what turns up.
 
Does it deal adequately with potential insidious onset? There seems plenty about new symptoms arising after acute onset. Perhaps I have missed it.
 
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