UK - NICE guideline on Long Covid

Esther12 said:
In a UK context, 'multidisciplinary management and support' sounds like exactly what I'd want to avoid!

At the moment, there's no real evidence that long-covid patients benefit from being managed by anyone.
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Precisely my thought. I don't know why Charles is advocating a 'multidisciplinary' approach.
Multidisciplinary, inmate or less all contexts, just means nobody in charge. I spent my life avoiding having anything to do with it.
 
chrisb said:
I think that before becoming too deeply involved Shepherd needs to establish his position vis-a vis those vociferous advocates who seek to stigmatise ME and differentiate themselves from ME patients on highly questionable grounds. If he is not careful he may find himself with strange allies. A little clarity is called for.
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I think that we should try to be extra kind and understanding about long-covid patients that seem to hold views about ME/CFS that seem ill-informed or unreasonable at this point - they're going through a really weird experience that is not going to leave them in the best state of mind for engaging with al the complexities around ME/CFS. Also, I've seen a few ME/CFS patients on social media behaving in a way that would likely make long-covid patients want to stay well away from ME/CFS (misplaced certainty in odd sounding ideas about the cause of symptoms, etc). We know how vague talk about 'vociferous advocates' that does not recognise the legitimate reasons advocates have for concern can be a problem for us.
 
I think we have to be very careful. I am well aware of what they are going through but you cannot allow certain narratives to take hold. It is much easier to take on the hydra before it has sprouted a hundred heads. It is clear that a smallish group wishes to frame a particular narrative. There will be plenty willing to agree with the claims to exceptionalism - it might prolong their own careers.

We need to be very cautious of people with links to David and Hotopf and also the Southampton crew.
 
Esther12 said:
I think that we should try to be extra kind and understanding about long-covid patients that seem to hold views about ME/CFS that seem ill-informed or unreasonable at this point - they're going through a really weird experience that is not going to leave them in the best state of mind for engaging with al the complexities around ME/CFS.
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chrisb said:
I think we have to be very careful. I am well aware of what they are going through but you cannot allow certain narratives to take hold. It is much easier to take on the hydra before it has sprouted a hundred heads.
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I think you both have a point.

Yes, we do need to treat others kindly and supportively whether they are newly ill with covid or ME or whatever. It is a frightening time and extremely stressful time with a steep learning curve. It's also a time when you are most likely to be kicked in the teeth by the people you would expect to be supportive including medics, friends & family plus colleagues.

However, many of the complexities faced by covid patients will be similar to complexities faced by ME patients. Correcting misinformation is important - particularly where it could lead to further discrimination of people with either condition. Just because you are trying to educate about one doesn't mean you shouldn't have to answer if you spread disinformation about the other & that works both ways.

It's the manner in which it's done that is most important, I think. There will always be some whether ME or covid sufferers who will work against the cause of their fellow sufferers, whether deliberately or not. All the more reason to speak up than allow the impression they speak for all of us.
 
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Possibility of ME or PVFS after COVID-19, Long Covid




https://nice-newsroom.prgloo.com/ne...e-long-term-effects-of-covid-19-press-release

30 Oct 2020

NICE, SIGN and RCGP set out further details about the UK guideline on management of the long-term effects of COVID-19

PRESS RLEASE

NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) have today (30 October 2020) given more details about the forthcoming guideline on post-COVID syndrome which is due to be published by the end of the year.

The guideline scope published today defines post-COVID syndrome (also known as Long COVID) as signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis. It says the condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body. It also notes that many people with post-COVID syndrome can also experience generalised pain, fatigue, persisting high temperature and psychiatric problems.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “Recovery from any infectious illness can take time and although most people with COVID-19 will recover completely within a few weeks from the onset of symptoms, we know that a sizeable minority will continue to have symptoms for 12 weeks or more afterwards, regardless of how ill they were initially or whether they were hospitalised.

“This is a new condition and there is still a lot we don’t know about it. Our aim is that the post-COVID syndrome guideline will begin by setting best practice standards of care based on the current evidence but, as our understanding of the condition grows, be adaptable and responsive to new evidence as it emerges.”

Safia Qureshi, Director of Evidence for Healthcare Improvement Scotland, of which SIGN is a part, said: “We understand that Long COVID is creating great distress and uncertainty for those affected, and that the NHS requires the best available advice to support people effectively, even as we continue to seek to understand it. The scope report is a first and vital stage in the production of a guideline which aims to identify symptoms and outline treatment options. We’re delighted to work with NICE and the RCGP on this important piece of work.”

Professor Martin Marshall, Chair of the Royal College of GPs, said: “Before we can effectively diagnose, treat and manage a condition, we need to know what we’re dealing with, so it’s encouraging to be making such rapid progress in this regard as we work with NICE and SIGN to develop this important guidance. The prolonged health effects that some patients experience after contracting COVID-19 can have a terrible impact on their lives – and as GPs, we want to do what we can to help them.

“Now that we are clear about its scope, we can move forward in developing guidance, based on the latest evidence, to support GPs to deliver the most appropriate care and support to patients suffering with the long-term effects of Covid-19 in the community. This guidance will need to evolve as our understanding of the condition grows through clinical experience and robust research”

The scope outlines what areas the guideline will cover. These will include, among other things, what symptoms or signs should prompt a referral for specialist assessment or management, what pharmacological and non-pharmacological interventions improve physical or mental health symptoms following acute COVID-19, and how best to deliver post-COVID syndrome recovery and rehabilitation services.

NICE, SIGN and RCGP are developing the guideline jointly, alongside an independent cross-specialty clinical group. They will consider a wide range of evidence including that drawn directly from the views and experiences of people with post-COVID syndrome.

As with other rapid COVID-19 guidelines, the guideline on post-COVID syndrome will be made available internationally so that health systems around the world can see the approach that the UK is taking.

Ends

Contact Information
Philip Ranson
NICE
philip.ranson@nice.org.uk

Notes to editors
  1. The Scottish Intercollegiate Guidelines Network (SIGN) is part of Healthcare Improvement Scotland, Scotland’s health and social care improvement body. The purpose of Healthcare Improvement Scotland is to enable the people of Scotland to experience the best quality health and social care.
  2. The Scottish Intercollegiate Guidelines Network (SIGN) was formed in 1993. Its objective is to improve the quality of health care for patients in Scotland by reducing variation in practice and outcome, through the development and dissemination of national clinical guidelines containing recommendations for effective practice based on current evidence.
  3. For media enquiries relating to SIGN, please contact Stephen Ferguson, Communications Manager, 07779 329 689, ferguson@nhs.scot

About NICE
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for driving improvement and excellence in the health and social care system. We develop guidance, standards and information on high-quality health and social care. We also advise on ways to promote healthy living and prevent ill health.

Our aim is to help practitioners deliver the best possible care and give people the most effective treatments, which are based on the most up-to-date evidence and provide value for money, in order to reduce inequalities and variation.

Our products and resources are produced for the NHS, local authorities, care providers, charities, and anyone who has a responsibility for commissioning or providing healthcare, public health or social care services.

To find out more about what we do, visit our website: www.nice.org.uk and follow us on Facebook, LinkedIn, Instagram and Twitter.
 
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NICE Guideline Scope

https://www.nice.org.uk/guidance/gid-ng10179/documents/final-scope

COVID-19 guideline scope: management of the long-term effects of COVID-19

NHS England and the Chief Medical Officer of the Scottish Government have asked NICE and SIGN to develop a guideline on the long-term effects of COVID-19. This UK-wide guideline is being developed collaboratively by NICE, SIGN and the RCGP.

We acknowledge that there is still uncertainty in what is known about the long-term effects of COVID-19. Therefore, this guideline is being developed using a ‘living’ approach, which means that targeted areas of the guideline (including the case definition) will be continuously reviewed and updated in response to a developing and emerging evidence base.

1 Case definitions

For the purposes of this guideline, we will be using the terms described below to define the effects of COVID-19 at different time points. As noted above, these definitions will be continuously reviewed as evidence emerges and we begin to understand more about the long-term effects of COVID-19.

Acute COVID-19 infection
Signs and symptoms of COVID-19 for up to 4 weeks.

Ongoing symptomatic COVID-19
Signs and symptoms of COVID-19 from 4 weeks up to 12 weeks.

Post-COVID-19 syndrome
Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.

Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.


Rationale for the case definition of post-COVID-19 syndrome

Post: Signs and symptoms that continue after the acute phase of COVID-19. This does not assume that the COVID-19 illness is over or that people have recovered, but the acute phase has usually ended.

COVID-19: The person was diagnosed with COVID-19 based on clinical symptoms with or without a positive SARS-CoV-2 test (PCR, antigen or antibody). This clinical diagnosis can be made retrospectively based on symptoms alone for those who selfmanaged their acute illness.

Syndrome: Signs or symptoms that exist together. People may have 1 or more ongoing symptoms and still be included in the definition.

12 weeks: Recovery from any infective illness can take time. Although some studies address prevalence, these are subject to bias and the prevalence of COVID-19 symptoms at different time points remains unclear. The 12 week time period used for the purposes of this guideline has been developed by consensus and aligns with other related guidance on appropriate follow-up and discharge.

Clusters: Signs and symptoms may arise from any system in the body, often overlap, and may change over time. This includes but is not limited to the cardiovascular, respiratory, gastrointestinal, neurological, musculoskeletal, metabolic, renal, dermatological, otolaryngological, haematological and autonomic systems, in in addition to psychiatric problems, generalised pain, fatigue and persisting fever.


2 Who the guideline will cover

Recommendations in the guideline will cover:

• Adults, young people and children diagnosed with COVID-19, based on clinical signs and symptoms, with or without a positive SARS-CoV-2 test (PCR, antigen or antibody) whose symptoms continue for more than 4 weeks from the start of an acute COVID-19 infection.

Subgroups identified as needing specific consideration will be considered during the development of the guideline.

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3 Who the guideline is for

The guideline will be of interest to:

• Health and social care practitioners, commissioners and providers of NHS-funded healthcare services

• People using services, their families and carers. It may also be relevant to providers of private healthcare services.


4 Equality considerations

An equalities impact assessment was carried out during scoping. The assessment:

• lists equality issues identified, and how they have been addressed

• explains why any groups are excluded from the scope. The guideline will look at inequalities relating to accessing healthcare services and prevalence of ongoing symptoms in different population groups.


5 Proposed themes and questions

This section lists the proposed key themes and questions that we will consider when developing the guideline. We will look at evidence in these areas when developing the guideline, but it may not be possible to make recommendations in all areas. This section also lists themes that will be excluded; these are outside the scope of the guideline, and we will not look at evidence in these areas.

Key themes

• Investigations and assessment
• Management and rehabilitation
• Referral
• Inequalities
• Lived experience of people Key questions
• Investigation and assessment

− What risk factors are associated with developing post-COVID-19 syndrome?
− What is the prevalence of symptoms or clusters of symptoms (physical and mental health) and problems carrying out usual activities, including work, education and leisure, among people who have symptoms of COVID-19 for a duration of 4 to 12 weeks?
− What is the prevalence of symptoms or clusters of symptoms (physical and mental health) and problems carrying out usual activities, including work, education and leisure, among people who have symptoms of COVID-19 beyond 12 weeks?
− What investigations should be carried out to determine appropriate management or treatment of symptoms?

• Management and rehabilitation

− What pharmacological and non-pharmacological interventions improve the ongoing physical and mental health symptoms and problems carrying out usual activities, including work, education and leisure, following acute COVID-19?
− What monitoring is helpful to assess deterioration or recovery in people with ongoing physical and mental health symptoms and problems carrying out usual activities, including work, education and leisure, following acute COVID-19?
− What symptoms or signs indicate that referral to specialist care is needed for assessment or management of post-COVID-19 syndrome?
− What components should be included in a service model for the delivery of services to people with post-COVID-19 syndrome?

• Lived experience of people
− What are the views and experiences of patients, their families and carers about:

o signs and symptoms of post-COVID-19 syndrome?
o access to services?
o how their symptoms were assessed?
o management of symptoms and rehabilitation?
o the patient care pathway?
o information and support provided?


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[ED: My highlighting in brown]


Themes to be excluded from the evidence search

• Management of acute COVID-19 (symptoms experienced for up to 4 weeks)

• Management of other conditions with similar features to post-COVID-19 syndrome, for example post-intensive care syndrome and myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)

• Management of end-organ damage, which already has defined pathways of care.


6 Related NICE guidance

Table 2 lists related NICE guidance (both published and in development) and any overlaps with this guideline.

nice-scope-lc19-table-2.png


7 About COVID-19 rapid guidelines

Both NICE and SIGN have published COVID-19 rapid guidelines containing recommendations on managing known or suspected COVID-19. NICE COVID-19 rapid guidelines include general measures to reduce exposure to infection and areas of the patient pathway where management will be different because of COVID-19.

They do not generally include recommendations on:

• staff training needed to deliver care if workforce capacity is reduced

• procuring, distributing and using personal protective equipment

• procuring and distributing COVID-19 tests.

SIGN COVID-19 rapid guidelines have been developed in response to the COVID-19 pandemic situation and do not follow the standard process used by SIGN to develop guidelines. The recommendations are based on available evidence and expert opinion, with fast expert peer review as assurance.

© NICE 2020. All rights reserved. Subject to Notice of rights.

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Guideline Scope: h[URL]https://www.nice.org.uk/guidance/gid-ng10179/documents/final-scope[/URL]

Press Release (October 30, 2020): https://nice-newsroom.prgloo.com/ne...e-long-term-effects-of-covid-19-press-release
 
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Dx Revision Watch said:
Themes to be excluded from the evidence search

• Management of acute COVID-19 (symptoms experienced for up to 4 weeks)

• Management of other conditions with similar features to post-COVID-19 syndrome, for example post-intensive care syndrome and myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)
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So they are specifically excluding any similarities with ME?

So according to my reading of this they will deliberately ignore anything that suggests that people with long covid may end up with ME, no matter if they meet the diagnostic criteria (fully, including the exclusion criteria).

Not that i know if any will, although it does seem likely, but actively refusing to acknowledge this, if it happens, does not seem 'sensible'.

It seems something else.
 
 
Dx Revision Watch said:
Themes to be excluded from the evidence search

• Management of acute COVID-19 (symptoms experienced for up to 4 weeks)

• Management of other conditions with similar features to post-COVID-19 syndrome, for example post-intensive care syndrome and myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)
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I’m not entirely clear what this means. Are they suggesting that people who meet the diagnostic criteria for ME/CFS following suspected Covid-19 should be diagnosed with ME/CFS and therefore treated according the guideline for that condition? If that is so, it seems like a sensible approach (notwithstanding the fact that the current NICE Guideline for ME/CFS is not fit for purpose), but it should be stated specifically. [Edit: preferably with a caveat about the problems with that guideline and the evidence upon which it is based.]

Alternatively, if they are suggesting that people who meet the ME/CFS criteria following suspected Covid-19 should be treated differently to other people who meet the criteria, and that the existing evidence pertaining to ME/CFS should be excluded when making recommendations for management and treatment of “post-covid syndrome”, that seems bizarre and concerning.
 
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Robert 1973 said:
I’m not entirely clear what this means. Are they suggesting that people who meet the diagnostic criteria for ME/CFS following suspected Covid-19 should be diagnosed with ME/CFS and therefore treated according the guideline for that condition? If that is so, it seems like a sensible approach (notwithstanding the fact that the current NICE Guideline for ME/CFS is not fit for purpose), but it should be stated specifically.

Alternatively, if they are suggesting that people who meet the ME/CFS criteria following suspected Covid-19 should be treated differently to other people who meet the criteria, and that the existing evidence pertaining to ME/CFS should be excluded when making recommendations for management and treatment of “post-covid syndrome”, that seems bizarre and concerning.
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@Robert 1973 and @Wonko

Although development of this guideline is being fast-tracked under the NICE Rapid Guideline process, I assume there will be a public consultation period before the guideline is finalised where your concerns can be raised; the Scoping document was put out for consultation but only for a short period (23/10/2020 - 27/10/2020).

I won't be active beyond the end of this month/early November (I'm just hanging on for the November interim release of the SNOMED CT UK Edition to be posted on the NHS Digital browser - now scheduled for November 11). Might the forum consider registering as a stakeholder?

I don't know whether any of the ME, CFS patient orgs are considering registering as stakeholders.

Current Stakeholder list: https://www.nice.org.uk/guidance/gid-ng10179/documents/stakeholder-list
 
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Dx Revision Watch said:
NICE's response to comments on draft scope published (30 October 2020): https://www.nice.org.uk/guidance/gid-ng10179/documents/scope-comments-and-responses-2
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Themes to be excluded

Several responders queried the exclusion of people with conditions that have symptoms similar to long-COVID, e.g. ME/CFS or post-ICU syndrome as follows:
•Difficulty in distinguishing between post-COVID syndrome and CFS, ME, fibromyalgia, etc.
•Should patients with organ damage or ME/CFS which are often symptomatic of long-COVID be excluded from the guideline?
•There may also be increased risk of long-COVID in patients with pre-existing CFS/ME, etc.
•How will overlapping symptoms & experiences be attributed to one or the other?
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The section on themes to be excluded has been changed to ‘themes to be excluded from the evidence search’ and the detail within this section has been amended to reflect that the management of these conditions where there are already defined pathways of care are excluded from the search for evidence, in order to focus on post-COVID syndrome and avoid overlap with other care pathways and existing guidance.
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re complaints about the use of Post-covid 19 as the label:

The panel discussed various options for naming the condition, but concluded that ‘post-Covid’ was appropriate for the purposes of this guideline. The panel recognised that ‘Long COVID’ is a patient embraced term and has many benefits. However, they balanced this against the need for a formal recognition of the condition in the medical setting and to implement appropriate services and coding to support the care of people with post-COVID syndrome.
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Why would 'Long Covid' prevent formal recognition of the condition in a medical setting? Medical professionals would refuse to help if patients had a name they didn't like, so the preferences of their bodies must always be prioritised?

Dx Revision Watch said:
Consultation comments published (30 October 2020): https://www.nice.org.uk/guidance/gid-ng10179/documents/consultation-comments-and-responses
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I just had a quick look and there was at least one patient group in there raising concerns about the risks of recommending CBT/GET on the basis of badly flawed research from ME/CFS.

The BSRM seemed to be taking a more MUS approach.

11.British Society of Rehabilitation Medicine
Scope'4''9'
Presumably the risk factors that will be explored will include pre-COVID-19 physical & mental health problems, such as-people who have medically unexplainable symptoms or physical presentations which may be psychologically mediatedpre-existing chronic fatigue syndromepain syndromes (eg:fibromyalgia)

12.British Society of Rehabilitation Medicine
Scope'4''14 -16'
Can impact on relationships & caring responsibilities be included? Impact on ability to participate in education should be include
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Wonko said:
So they are specifically excluding any similarities with ME?

So according to my reading of this they will deliberately ignore anything that suggests that people with long covid may end up with ME, no matter if they meet the diagnostic criteria (fully, including the exclusion criteria).

Not that i know if any will, although it does seem likely, but actively refusing to acknowledge this, if it happens, does not seem 'sensible'.

It seems something else.
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It's an impossible situation. The ME guidelines are completely incompetent and harmful. They can't link to them. They can't declare them invalid because of all the fighting us over the years. So they'll just hope there's no real connection and keep them separated until events force them otherwise. The only good advise is the exact opposite of what they currently promote, what they have been fighting tooth and nail for decades.

It's best they separate them for the Long Covid. It's horrible for us. But they've been fighting and maligning us for decades, we are already largely hated, and so it's all a gamble on things being separate enough that it doesn't blow up in their faces. It will blow up in their faces.

But as expected, this will hurt both patient communities. All to preserve egos and avoid embarrassing institutions. As is tradition, because patient safety is not a real concern, what really matters is careers and ideology.
 
Esther12 said:
...Why would 'Long Covid' prevent formal recognition of the condition in a medical setting? Medical professionals would refuse to help if patients had a name they didn't like, so the preferences of their bodies must always be prioritised?
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The WHO, ICD and SNOMED CT agreed official term and associated coding for the virus (and its associated terminology and codes, for which there are a significant number) is already

"COVID-19" - not "COVID" or "Covid".


I have considered from the start that the WHO, SNOMED International, NICE and other bodies would be reluctant to approve the term "Long Covid" for use in classifications and terminologies - and these are what clinicians and coders, internationally, will be using, either in English or as translations, for patient records, treatment pathways and statistical analysis.

Likewise, the term "Long" is not much used in ICD in the context of "duration" or sequelae.
 
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Also, new clinical terms for classification and terminology systems need to be unique. What happens if we get, say, a "Corona Virus Disease 2023" or "COVID-23" which also results in its own post viral sequelae and long term symptoms?

There may be a need, clinically, and for data analysis to distinguish between COVID-19 sequelae and COVID-23 sequelae - for which the term "Long Covid" would be inadequate.
 
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