UK - NICE guideline on Long Covid

@Esther12, sorry I am not able to trawl through all the comments, can you tell me which patient group said that so can go direct to their comment? Many thanks.

 

@Robert 1973, I am not clear whether they are even trying to group those with post CoVid who end up meeting ME/CFS criteria as a separate group? It could also be read as they are approaching it that all post CoVid is definitely separate to ME? (I know we don’t know yet)

Generally, as rvallee said the whole thing is a mess. We know the current existing NICE guidelines for ‘CFS/ME’ are not fit for purpose so if they are trying to not include the recommendations in current cfs/me guidelines in this proposed post CoVid guideline because they know the advice is bad then that is a good thing.

However, should the new CFS/ME guidelines to be released in April be an improvement and make clear that GET is not suitable (I don’t think CBT is either which they may well keep in but that’s another conversation) and this current committee are aware this might happen but want to include some kind of GET in the post CoVid guidelines under ‘rehabilitation’ - which they keep referring to to my concern- then they would want to steer clear linking post CoVid to ME/CFS in any way. It’s v unclear to me at the moment which way they are thinking and if the latter then v concerning.

 

Chronic Long Covid Support Group had some things, but I've not read the document properly either.

 

Thanks @Esther12.

Lucibee in her twitter thread someone linked to above also points out in a further tweet the NICE evidence the post CoVid committee are going to look at. They plan to look at guidelines for rehabilitation recovering after critical illness and treating post traumatic stress disorder. Photo attached of the table included in the post CoVid scope document. This suggests me they are probably going to focus on a predominantly psycho social approach. Graded activity to recover from inactivity from critical illness and then couch everything else due to post traumatic stress.

They don’t seem to wish to entertain the idea that the abnormal activity response many people with post CoVid are reporting could be the same energy dysfunction happening in ME which means standard rehabilitation from inactivity after critical illness would be inappropriate. As we know if some of the post CoVid patients have the same energy dysfunction - know we still don’t know but reports from post CoVid patients suggests this is possible- then like people with ME they would not be able to be rehabilitated to full recovery until effective biomedical treatments are developed.

 

NICE in their document that lists replies to stakeholders’ comments explain why they excluded mention of other conditions that have some similar symptoms such as ME and organ damage. See attached photo, link also included, it’s on page 16. https://www.nice.org.uk/guidance/gid-ng10179/documents/scope-comments-and-responses-2

They said they would change the title in the final scope document (which they have) to ‘themes excluded from the evidence search.’ They say they haven’t included any evidence to be searched where there are already defined pathways of care in order to focus on post-COVID syndrome and avoid overlap with other care pathways and existing guidance. However, as the scope says they will look at Post Traumatic Stress Disorder and Rehabilitation after Critical Illness in Adults guidelines in their evidence search this explanation does not make much sense to me as these two guidelines include care pathways too.

 

Lots of interesting discussion down below. Also very disappointing, sadly predictable it would go this way.

https://twitter.com/user/status/1323630821228580870

 

https://twitter.com/user/status/1323637224752164864

https://twitter.com/user/status/1323896691284709376

https://twitter.com/user/status/1323904464189874182


eta: last tweet; account no longer exists.

 

At least I think that the community will be ready to push back the inevitable BPS hostile takeover. They responded poorly to the doom and gloom at first, too demoralizing, but after months of gaslighting they understand it wasn't just wild ravings and this is very real and coming their way like a freight train.

And for good measure the patients are excluded from the very secretive process, which pretty much guarantees full BPS. At least they will be prepared, but truly the only factor will probably be the physicians with Long Covid who are involved and their personal experience with it.

My prediction is that the whole process leaves everything PVFS/ME/CFS and co-morbidities to the upcoming ME guidelines and make a clear separation. So I hope the Long Covid community will be all over it because like it or not, it will apply to them as much as it does to us, at least for anything that doesn't make a test go BEEP.

 

https://www.nice.org.uk/news/articl...nt-of-access-for-covid-19-guidance-and-advice

NICE has today (6 November) announced that it is to host a new, single point of advice on caring for people with Covid-19 and the management of Covid-19 in a variety of clinical settings.

06 November 2020

The initiative will see NICE bringing together NHS England and NHS Improvement’s specialty guides on Covid-19 with its own Covid-19 rapid guidelines. Together they will create a single point of access to national advice on the clinical management of Covid-19 to support frontline health and care staff across the country.

The initial phase, completed today, has seen 24 NHS England and NHS Improvement Covid-19 specialty guides transferred over to NICE and hosted on the NICE website. Developed as part of the initial response to Covid-19, and to support clinical teams across the country, these cover a range of topics including specific treatment of Covid-19 and its complications, and continued care of patients with a range of conditions, including Covid-19, during the pandemic.

The NHS England and NHS Improvement specialty guides were downloaded from its website more than 158,000 times during April, May and June 2020, while NICE’s 22 rapid Covid-19 guidelines have received over 2.3 million unique page views since March 2020.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “This important initiative will see the creation of a single, trusted, integrated suite of Covid-19 guidance for clinicians and care staff.

“It will enable us to capitalise on the work that was done rapidly in the face of the initial outbreak and adapt our approach so we can continue to best meet the needs of the system.

“The resource will be easier to find and will be kept up to date to ensure it remains relevant in light of new, emerging evidence and as the pandemic develops and changes.”

NICE will now begin the process of mapping the recommendations from the NHS England and NHS Improvement guides against its own suite of Covid-19 rapid guidelines and integrating them where possible. As an interim step, the specialty guides will be refreshed to amend any broken hyperlinks and correct any factual inaccuracies.

 

Let's just hope that their 'advice' isn't dangerous dogmatic hogwash.

 

Is there a list of the Guideline members for the Long COVID GDL?

 

Going by the ME Guidelines process I would expect to see a separate document listing them here, https://www.nice.org.uk/guidance/indevelopment/gid-ng10179/documents, but there isn't. Possibly it's part of the other documents at that link?

 

I haven't been able to find a members' list yet.

It's not in the Scope document.

 

https://twitter.com/user/status/1323701321392934915


https://twitter.com/user/status/1324782133362204672

 

I've asked NICE for this but not received a reply.

 

Production of NICE Rapid Guidelines:

https://www.nice.org.uk/process/pmg...-8779776589/chapter/introduction-and-overview

Appendix L: Interim process and methods for guidelines developed in response to health and social care emergencies

1 Introduction and overview

(...)

• During health and social care emergencies, urgent guidelines are needed within a few days to 2 to 3 weeks. The development time depends on the urgency of the referral, the complexity of the topic, the number of questions to be addressed, and the likely volume of evidence.
  
  
• The short timeframe for guideline development in response to a health and social care emergency imposes trade-offs about shortening, omitting or accelerating the processes and methods used for developing standard NICE guidelines. However, transparency of decision-making and reporting is one of NICE's core principles underpinning the development of all NICE guidance and standards. It ensures that users can make judgements on the credibility and applicability of the guideline recommendations.
  
  
• Independent advisory expert panels are convened to perform the role of the independent advisory committee in standard guidance development and update. NICE's policy on declaring and managing interests will apply to all panel members and NICE staff.
  
  
• The main stages of development include scoping, identifying and appointing the independent advisory expert panel, conducting evidence reviews, drafting recommendations and consulting stakeholders. Because of the short development timeframe, some of these stages may be undertaken iteratively or in parallel. When the guidance is needed urgently, publication of guideline recommendations will be prioritised, with a possible delay in the publication of accompanying evidence reviews and supporting documents.
  
  
• The interim process and methods described in this appendix should not be applied to the development, surveillance or updating of guidelines outside the context of health and social care emergencies.
  

 

Psychiatrists promoting themselves again, in consultation comments, p41

https://www.nice.org.uk/guidance/gid-ng10179/documents/consultation-comments-and-responses-2

220. Royal College of Psychiatrists Scope 'General'

'' It should be noted in the document that diagnosable (and treatable) psychiatric disorders are likely to be risk factors for and perpetuating factors in Long Covid. We would also note the significant experience and expertise in the UK psychiatric community on the management of post-infectious fatigue states and chronic fatigue syndromes."

 

Yes well. ..

Some psychiatric problems may lead to behaviours that make catching coronavirus more likely, so I suppose they could be seen as predisposing towards long covid, in that sense only.

I doubt that is what they intend people to understand from their statement tho.

As for their long history of mistreatment of people with post viral syndromes, I'm surprised they would wish to draw attention to it, let alone promote it.

Might be close to time for them to shut up about psyche mistreatment of patients.

With enough exposure anyone making claims about such experience might be wise to keep their head down, rather than blatantly touting for business, in areas they have shown such gross incompetence in.

 

Now I can think about NICE and other issues, with the US elections over finally!

 

I will indeed note that it is disastrous and immoral. It is very notable because it consists of the worst failure of expertise in human history.

Self-serving interloping jerks.