UK: NICE Longcovid guideline 2020

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.

 

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.

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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.

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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.

 

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?

 

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.

• 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.

FORM_Expert_testimony_-_Edward_Nicol_v2_FINAL_r393363.pdf (magicapp.org)...

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.