Ariel
Senior Member (Voting Rights)
Am I given to understand that as it's a "living guideline" of some kind and being done in a different way to other guidelines, it will never be "published"?
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UK: NICE Longcovid guideline 2020
- Thread starter Medfeb
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Am I given to understand that as it's a "living guideline" of some kind and being done in a different way to other guidelines, it will never be "published"?
Dx Revision Watch
Senior Member (Voting Rights)
The Long Covid guideline was developed using the "Rapid Guideline" process:
https://www.nice.org.uk/guidance/ng188
COVID-19 rapid guideline: managing the long-term effects of COVID-19
NICE guideline [NG188]Published: 18 December 2020
(...)
Guideline development process
We are using a ‘living’ approach for the guideline, which means that targeted areas will be continuously reviewed and updated in response to emerging evidence.
We developed this guideline using the interim process and methods for guidelines developed in response to health and social care emergencies.
rvallee
Senior Member (Voting Rights)
Honestly, the "living guideline" thing seems mostly to be about "don't hold us accountable for anything in there, it could change at any moment". Sounds like the perfect excuse to eat their cake and have it too. But since it's all done in secret who the hell knows?
Ariel
Senior Member (Voting Rights)
That's right. There is no accountability that I can tell. Long covid patients are also not being protected from anything people want to do to them.
Edit: a proportion of them (with PEM, 6 months+) are also not being told that they likely have ME/CFS and believe it's a different condition so they won't be able to benefit from changes in the new guideline
Edit: a proportion of them (with PEM, 6 months+) are also not being told that they likely have ME/CFS and believe it's a different condition so they won't be able to benefit from changes in the new guideline
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Dx Revision Watch
Senior Member (Voting Rights)
COVID-19 rapid guideline: Managing the long-term effects of COVID-19
List of expert advisory panel members and declarations of interest:
https://www.nice.org.uk/guidance/ng188/documents/register-of-interests
Stakeholder list:
https://www.nice.org.uk/guidance/ng188/documents/stakeholder-list
Summary of consultation comments and responses for COVID-19 guideline scope: management of the long-term effects of COVID-19:
https://www.nice.org.uk/guidance/ng188/documents/consultation-comments-and-responses-4
Management of the long-term effects of COVID-19 Targeted peer consultation on draft scope Comments table 23/10/2020-27/10/2020:
https://www.nice.org.uk/guidance/ng188/documents/consultation-comments-and-responses
Managing the long-term effects of COVID-19
Targeted consultation on draft guideline Comments table 26/11/2020-01/12/2020:
https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation
Summary of consultation comments and responses for the COVID-19 guideline: managing the long-term effects of COVID-19
https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation-2
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Dx Revision Watch
Senior Member (Voting Rights)
https://www.s4me.info/threads/uk-nice-longcovid-guideline-2020.17338/page-2#post-375639
The Stakeholder List is the second link from the top of my post.
My point being, that the development process for this Rapid Guideline did have Stakeholders, Consultations and Consultation Reponses.
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How interesting. It is pretty good, especially when we consider the NICE/SIGN/RACGP post-Covid-19 syndrome guideline it is based on. It's good to see a picture of a health care worker looking exhausted, and mention of how GPs have themselves suffered with post-Covid-19 symptoms and have not been treated well. (Edit - I don't mean that quite how it sounds- I mean the heavy toll Long Covid has taken on health care workers seems to be helping to make it difficult for medical authorities to ignore.)
There's an assumption that rehabilitation will help fix things (e.g. Over the next few weeks he slowly improves, using 'YourCOVIDrecovery' as a rehabilitation tool). The guideline this module is based on has a lot more about rehabilitation, a lot of suggestions that goal setting is somehow going to be therapeutic.
It's interesting that the e-learning module does refer to post-infection issues from SARS and MERS and the flu. Still no mention of ME/CFS of course - that would require too much changing of world-views.
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Andy
Retired committee member
Email from NICE.
Dear Stakeholders,
RE: NICE/SIGN/RCGP COVID-19 rapid guideline: ‘NG188 - Managing the long-term effects of COVID-19’ (update)
The final updated guideline has now been published on the NICE and MAGICApp websites:
https://www.nice.org.uk/guidance/ng188
https://app.magicapp.org/#/guideline/5786
You can view the comments that we received during consultation here: (https://www.nice.org.uk/guidance/ng...documents/consultation-comments-and-responses). These were invaluable in helping us to develop and refine the updated guideline and we are grateful for your feedback. You can also find a thematic summary with our responses here: (https://www.nice.org.uk/guidance/ng...cuments/consultation-comments-and-responses-2)
We would like to thank you for your help and interest in developing this important piece of work and any support you can give to promote its use in practice. We plan to update this guideline regularly to reflect the latest evidence and information.
Dear Stakeholders,
RE: NICE/SIGN/RCGP COVID-19 rapid guideline: ‘NG188 - Managing the long-term effects of COVID-19’ (update)
The final updated guideline has now been published on the NICE and MAGICApp websites:
https://www.nice.org.uk/guidance/ng188
https://app.magicapp.org/#/guideline/5786
You can view the comments that we received during consultation here: (https://www.nice.org.uk/guidance/ng...documents/consultation-comments-and-responses). These were invaluable in helping us to develop and refine the updated guideline and we are grateful for your feedback. You can also find a thematic summary with our responses here: (https://www.nice.org.uk/guidance/ng...cuments/consultation-comments-and-responses-2)
We would like to thank you for your help and interest in developing this important piece of work and any support you can give to promote its use in practice. We plan to update this guideline regularly to reflect the latest evidence and information.
Hoopoe
Senior Member (Voting Rights)
The impression is that the Long Covid guideline tries to avoid acknowledging any similarity to ME/CFS, despite physical activity being listed as the most common cause of relapse.
I have doubts that this will work out well for them. One thing it could do is make ME/CFS the diagnosis that many LC patients feel is the more accurate one.
I think the stigma that thy're trying to distance themselves from comes from attitudes within medicine and broader society towards "medically unexplained symptoms", and not from anything intrinsic to ME/CFS. And also bad research being tolerated. The problems simply goes deeper than superficial labels and so nothing is solved by avoiding mentioning ME/CFS and PEM.
To address the stigma they need to fight against the common prejudices, such as the idea that lack of objective diagnostic test means the illness has a psychosocial cause.
I have doubts that this will work out well for them. One thing it could do is make ME/CFS the diagnosis that many LC patients feel is the more accurate one.
I think the stigma that thy're trying to distance themselves from comes from attitudes within medicine and broader society towards "medically unexplained symptoms", and not from anything intrinsic to ME/CFS. And also bad research being tolerated. The problems simply goes deeper than superficial labels and so nothing is solved by avoiding mentioning ME/CFS and PEM.
To address the stigma they need to fight against the common prejudices, such as the idea that lack of objective diagnostic test means the illness has a psychosocial cause.
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The Science for ME submission appears near the end of the stakeholder submissions in 'General'. I've copied it here with formatting added for readability.
*************************
Better focus on symptoms not attributable to identified tissue damage.
We think the guideline has improved by moving away from lumping all post-Covid symptoms into a Post- Covid-19 Syndrome, and instead suggesting that identified problems such as heart or lung damage be treated in accordance with standard clinical pathways.
Inappropriate lack of reference to ME/CFS
It is clear that a substantial proportion of people with 'Post-acute Sequelae of Covid-19' as it is now defined meet the diagnostic criteria of ME/CFS, or are likely to do so in time. See, for example Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact (https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v3) where the most
common symptoms reported by people with Long Covid were fatigue (78%); post-exertional malaise - the defining feature of modern ME/CFS criteria (72%); and cognitive dysfunction (55%). There are numerous other papers from around the world reporting similar findings.
Long Covid is a post-infection syndrome, just as the syndromes following SARS, MERS, EBV, Q-fever and Ross River Fever are. Provided post-exertional malaise is present and the symptoms are present for more than 4 months, these syndromes fall under the ME/CFS umbrella and will be best managed according to the soon-to-be published 2021 NICE ME/CFS Guideline. This extensive guideline, which has been prepared by NICE with a careful examination of the evidence over a period of some four years, sets out how people can be given safe care.
We are pleased to see that the RCGP e-learning module for 'Post- Covid syndrome' is fairly good, and does refer to the post-infection syndromes following SARS-Cov1, MERS and the flu. It is therefore a shame, and inconsistent, that this guideline appears to completely ignore other post-infection syndromes and the resources available for them (for example, the 2021 NICE ME/CFS Guideline and ME/CFS patient charities) that could help support both people with Long Covid/PASC and the clinicians who care for them.
The 'Managing the Long Term Effects of Covid-19' guideline should make the connection with ME/CFS (as the umbrella term for long-lasting post-infection syndromes involving post-exertional malaise) clear, and link to the 2021 NICE ME/CFS Guideline. Guidance on diagnosing ME/CFS, including diagnostic criteria, should be included in the guideline.
Inappropriate focus on goal-setting
The recommendations for goal-setting throughout the guideline look all too similar to the historic approach to treatment of ME/CFS, which is now understood to have been incorrect. There is neither any theoretical basis nor evidence for the utility of exercise or programmes aimed at increasing motivation in the context of post-infection syndromes. We urge the guideline committee not to make the same mistake made for ME/CFS over the past 30 years, mistakes which have caused a great deal of harm. We recommend that Professor Jonathan Edward's testimony submitted to the recent ME/CFS guideline committee at https://www.nice.org.uk/guidance/GID- NG10091/documents/supporting-documentation-3 is reviewed.
Many people with ME/CFS report suffering short-term and even long-term harm as a result of undergoing therapist-based treatments for which there was no evidence. Given that there is no evidence of effective treatments for post-exertional malaise, the precautionary principle should prevail in the treatment of people with Long Covid with that symptom.
Need for better consultation process
Now that there is a guideline in place, it is time to move to a better consultation process. The process should be public so that organisations are able to consult before making submissions. It should allow sufficient time for preparing submissions, bearing in mind that many of the interested organisations will be staffed by people affected by Long Covid and other post-infection syndromes. Without looking more broadly at the evidence, including that related to ME/CFS, and lessons learnt in other relevant guidelines such as the 2021 NICE guideline for ME/CFS, the guideline will increase the chances of money wasted on rehabilitative efforts that have no evidence to support them, and that have a real chance of causing harm. We hope that the committee will take guidance from those with a well-informed knowledge of ME/CFS, including the major national ME/CFS charities, in order to improve this guideline to better serve the significant number of people who have developed, and will develop a post-infection syndrome following Covid-19.
**************************
*************************
Better focus on symptoms not attributable to identified tissue damage.
We think the guideline has improved by moving away from lumping all post-Covid symptoms into a Post- Covid-19 Syndrome, and instead suggesting that identified problems such as heart or lung damage be treated in accordance with standard clinical pathways.
Inappropriate lack of reference to ME/CFS
It is clear that a substantial proportion of people with 'Post-acute Sequelae of Covid-19' as it is now defined meet the diagnostic criteria of ME/CFS, or are likely to do so in time. See, for example Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact (https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v3) where the most
common symptoms reported by people with Long Covid were fatigue (78%); post-exertional malaise - the defining feature of modern ME/CFS criteria (72%); and cognitive dysfunction (55%). There are numerous other papers from around the world reporting similar findings.
Long Covid is a post-infection syndrome, just as the syndromes following SARS, MERS, EBV, Q-fever and Ross River Fever are. Provided post-exertional malaise is present and the symptoms are present for more than 4 months, these syndromes fall under the ME/CFS umbrella and will be best managed according to the soon-to-be published 2021 NICE ME/CFS Guideline. This extensive guideline, which has been prepared by NICE with a careful examination of the evidence over a period of some four years, sets out how people can be given safe care.
We are pleased to see that the RCGP e-learning module for 'Post- Covid syndrome' is fairly good, and does refer to the post-infection syndromes following SARS-Cov1, MERS and the flu. It is therefore a shame, and inconsistent, that this guideline appears to completely ignore other post-infection syndromes and the resources available for them (for example, the 2021 NICE ME/CFS Guideline and ME/CFS patient charities) that could help support both people with Long Covid/PASC and the clinicians who care for them.
The 'Managing the Long Term Effects of Covid-19' guideline should make the connection with ME/CFS (as the umbrella term for long-lasting post-infection syndromes involving post-exertional malaise) clear, and link to the 2021 NICE ME/CFS Guideline. Guidance on diagnosing ME/CFS, including diagnostic criteria, should be included in the guideline.
Inappropriate focus on goal-setting
The recommendations for goal-setting throughout the guideline look all too similar to the historic approach to treatment of ME/CFS, which is now understood to have been incorrect. There is neither any theoretical basis nor evidence for the utility of exercise or programmes aimed at increasing motivation in the context of post-infection syndromes. We urge the guideline committee not to make the same mistake made for ME/CFS over the past 30 years, mistakes which have caused a great deal of harm. We recommend that Professor Jonathan Edward's testimony submitted to the recent ME/CFS guideline committee at https://www.nice.org.uk/guidance/GID- NG10091/documents/supporting-documentation-3 is reviewed.
Perhaps the key point is the confusion between the 'objective' and the 'method' in terms of recovery. The objective is to be well enough to carry out normal activities. That in no way implies that the method applied to get better is to increase activity. The most salient feature of ME/CFS is an adverse reaction to exertion (Post-Exertional Malaise), so it makes no sense to treat it by increasing exertion. The evidence from both trials and rehabilitation clinic records (in as much as it is interpretable at all with high dropout rates, lack of recording of harm and inappropriate outcomes), is that exercise and motivational programmes have no effect on the level of activity that can be achieved and no long term effect on clinical progress as a whole.
Many people with ME/CFS report suffering short-term and even long-term harm as a result of undergoing therapist-based treatments for which there was no evidence. Given that there is no evidence of effective treatments for post-exertional malaise, the precautionary principle should prevail in the treatment of people with Long Covid with that symptom.
Need for better consultation process
Now that there is a guideline in place, it is time to move to a better consultation process. The process should be public so that organisations are able to consult before making submissions. It should allow sufficient time for preparing submissions, bearing in mind that many of the interested organisations will be staffed by people affected by Long Covid and other post-infection syndromes. Without looking more broadly at the evidence, including that related to ME/CFS, and lessons learnt in other relevant guidelines such as the 2021 NICE guideline for ME/CFS, the guideline will increase the chances of money wasted on rehabilitative efforts that have no evidence to support them, and that have a real chance of causing harm. We hope that the committee will take guidance from those with a well-informed knowledge of ME/CFS, including the major national ME/CFS charities, in order to improve this guideline to better serve the significant number of people who have developed, and will develop a post-infection syndrome following Covid-19.
**************************
It's a rapid response guideline, so it's supposed to be updated as needed.
Yes
Yes, the forum committee felt the same when we had just a handful of days to provide feedback given the detailed feedback we had provided for the first draft was so completely ignored. So, that's why we just made a general comment this time.
I think, until there is some change in the people in charge of this guideline, the elephant in the room that is ME/CFS will be ignored.
Ariel
Senior Member (Voting Rights)
Is there any hope of this? The process seems to have been very easy for whoever this is to control. It's quite worrying. I don't see any protection for long covid patients. It's like watching them trying to set up ME/CFS clinics all over again.
Having said that, the guideline has a 'NICE' label, so presumably the people ultimately in charge of the guideline are the NICE executives. Perhaps someone there would be open to understanding that it's not tenable for the close relationship between Long Covid and ME/CFS to be ignored much longer?
Ariel
Senior Member (Voting Rights)
Public Health England stakeholder comment:
"there is a real risk that broad communication about the likelihood / symptoms / severity of the condition will increase attribution of symptoms to Long COVID (even if these are unrelated)", will increase negative expectations about Long COVID, and will potentially have an adverse impact on health outcomes. Any broader public information should therefore focus on raising awareness of the support available, rather than the severity / impact of the condition. It would be useful to update the recommendation to reflect this. [PHE Behavioural Insights team comment]" p35
Edit to add PHE comment on p2 (my emphasis):
"Why is the long list of symptoms still included? It would be helpful to refine the list of symptoms – the list at the moment is so long, and so broad, it is only likely to encourage people to attribute any symptoms they are experiencing to Long COVID, it is not likely to be helpful to identify whether people are actually experiencing Long COVID. [advice from PHE Behavioural Insights Team]"
I have been reading the comments and those of PHE are particularly bleak. Quite disturbing reading.
I thought I should include this, on the case def, from PHE as well (p133) which I found shocking:
"From PHE our main comment on this guidance, as in the last round of consultation, remains that the proposed case definition still does not mandate any proof of infection (including antibody testing), and there is no sub classification within the very wide definition, hence interpretability and analysis is going to be incredibly difficult. This creates “noise” in the system and anxiety for all those who self-identify with “long covid”. There are a number of different syndromes and until there is some sub-categorisation of these groups research into treatment and outcomes will be difficult to progress as will optimising management and long term support. P8 for the case definition of post COVID 19 syndrome: It would be helpful to acknowledge that people may have symptoms for reasons that are not post covid syndrome and not due to an “alternative diagnosis” as stated in the definition. People may feel unwell after a prolonged stay in hospital/ITU and it may be worth mentioning this specifically or changing the wording of the definition to incorporate this. e.g. “are not explained by an alternative diagnosis or pathology”. Furthermore, evidence suggesting some of the common symptoms listed could be due to the effect of lockdown/being in a pandemic but this is not mentioned anywhere in the guidance (this has been highlighted in studies which include controls). We remain concerned that the case definition still does not mandate any proof of infection including antibody testing, and there is no subclassification within the very wide definition, interpretability and analysis is going to be incredibly difficult."
"there is a real risk that broad communication about the likelihood / symptoms / severity of the condition will increase attribution of symptoms to Long COVID (even if these are unrelated)", will increase negative expectations about Long COVID, and will potentially have an adverse impact on health outcomes. Any broader public information should therefore focus on raising awareness of the support available, rather than the severity / impact of the condition. It would be useful to update the recommendation to reflect this. [PHE Behavioural Insights team comment]" p35
Edit to add PHE comment on p2 (my emphasis):
"Why is the long list of symptoms still included? It would be helpful to refine the list of symptoms – the list at the moment is so long, and so broad, it is only likely to encourage people to attribute any symptoms they are experiencing to Long COVID, it is not likely to be helpful to identify whether people are actually experiencing Long COVID. [advice from PHE Behavioural Insights Team]"
I have been reading the comments and those of PHE are particularly bleak. Quite disturbing reading.
I thought I should include this, on the case def, from PHE as well (p133) which I found shocking:
"From PHE our main comment on this guidance, as in the last round of consultation, remains that the proposed case definition still does not mandate any proof of infection (including antibody testing), and there is no sub classification within the very wide definition, hence interpretability and analysis is going to be incredibly difficult. This creates “noise” in the system and anxiety for all those who self-identify with “long covid”. There are a number of different syndromes and until there is some sub-categorisation of these groups research into treatment and outcomes will be difficult to progress as will optimising management and long term support. P8 for the case definition of post COVID 19 syndrome: It would be helpful to acknowledge that people may have symptoms for reasons that are not post covid syndrome and not due to an “alternative diagnosis” as stated in the definition. People may feel unwell after a prolonged stay in hospital/ITU and it may be worth mentioning this specifically or changing the wording of the definition to incorporate this. e.g. “are not explained by an alternative diagnosis or pathology”. Furthermore, evidence suggesting some of the common symptoms listed could be due to the effect of lockdown/being in a pandemic but this is not mentioned anywhere in the guidance (this has been highlighted in studies which include controls). We remain concerned that the case definition still does not mandate any proof of infection including antibody testing, and there is no subclassification within the very wide definition, interpretability and analysis is going to be incredibly difficult."
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The panel however agreed that clinical judgment would be needed for exercise tolerance tests because it could be harmful to some people (for example, people with chest pain or severe fatigue).
Great, looking forward to hearing what expert makes that judgement, and how.
Meanwhile, expert witness Gp Capt Edward Nicol QHS gave some not-surprising insight into military opinions on rehab, ironic that this guideline was released on remembrance day yet puts the troops in the hands of people holding archaic views not represented in the guidelines for clinical excellence.
EDIT: this is how NICE want people to determine whether a sit to stand is safe for patients with e.e. severe fatigue
Great, looking forward to hearing what expert makes that judgement, and how.
Meanwhile, expert witness Gp Capt Edward Nicol QHS gave some not-surprising insight into military opinions on rehab, ironic that this guideline was released on remembrance day yet puts the troops in the hands of people holding archaic views not represented in the guidelines for clinical excellence.
- There is no specific recommendation for graded exercise, but exercise is encouraged and advice is tailored to patient needs.
- Cardio-pulmonary exercise testing has proven an excellent discriminator to identify those at risk of “hard” pathology. Meeting age predicted maximal exertion (which could be assessed at scale with Bruce Exercise ECG, or ramp bike protocols) excludes underlying pathology with high sensitivity and specificity.
- The provision of care has evolved into a more traditional post-viral rehabilitation model, with the physician-led service scaling back significantly, given the low prevalence of “hard” pathology found.
- Cardio-pulmonary exercise testing has proven an excellent discriminator to identify those at risk of “hard” pathology.
EDIT: this is how NICE want people to determine whether a sit to stand is safe for patients with e.e. severe fatigue
- The panel discussed that appropriate protocols could be found in these studies: Ozalevli S, Ozden A, and Akkoclu A (2007) Comparison of the sit-to-stand test with 6 min walk test in patients with chronic obstructive pulmonary disease and Briand J, Behal H, Chenivesse C et al. (2018) The 1-minute sit-to-stand test to detect exercise-induced oxygen desaturation in patients with interstitial lung disease. The panel could not recommend any one in particular as their effectiveness is undetermined.
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I have had ME for 26 years and had COVID last year. I have been referred to a COVID clinic and had a triage appointment with a physiotherapist last week. I have an appointment with a consultant in May 2022. (All appointments have been by phone except for a chest X ray and blood tests). I will be getting a place on an online fatigue management course. In the meantime I have received a booklet through the post, and a couple of documents. The booklet is very good. A document with advice on conserving energy is very good (I already follow the recommendations, having learnt through experience). I have concerns about some of the wording in one of the documents.
Ariel
Senior Member (Voting Rights)
Hi @Yvonne I am sorry to hear you had COVID last year; I hope you can improve. Thank-you for the information about your experience. What are the concerns about the documents? What does the advice on conserving energy consist in? I have been quite interested in what they are telling people and whether anything has been learned from those with ME. I myself had covid and did not recover but have not gone through this process.