UK - NICE guideline on Long Covid

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Possibility of ME or PVFS after COVID-19, Long Covid
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https://www.nice.org.uk/news/articl...id-covid-19-guideline-will-address-long-covid

NICE & SIGN announce latest rapid Covid-19 guideline will address Long Covid

NICE and the Scottish Intercollegiate Guidelines Network (SIGN) have today (5 October 2020) announced they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients.

05 October 2020

NICE and SIGN will develop the guideline jointly with the RCGP, alongside an independent cross-specialty clinical group.

People have reported persistent symptoms of Covid-19 regardless of how ill they were initially or whether they were hospitalised. Longer term impacts can include on-going shortness of breath, fatigue, heart, lung, kidney, neurological and musculoskeletal problems.

It is estimated there could be as many as 60,000 people in the UK who probably have Long Covid.1

The guideline will address, among other things, a formal definition of the disease, how to identify on-going symptoms and a definition of best practice investigation and treatment options to support the management of the condition across diverse communities.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “There is growing evidence to suggest Covid-19 is a multi-system disease that for many people involves persistent symptoms with longer term impacts on their health. It is important, therefore, that people requiring ongoing support and treatment are identified quickly and are supported by the NHS throughout every stage of their journey. We also want to ensure that clinicians have clear guidance on how best to support patients struggling with this newly emerging disease.”

Roberta James, Programme Lead for SIGN, said: “National guidance in this emerging field will help to align services with the needs of people who may be at risk of receiving inconsistent care. The guideline will support health and care services with recommendations on monitoring, testing, treatment options and the provision of advice and support for those who are experiencing these long-term effects.”

Professor Martin Marshall, Chair of the Royal College of GPs, said: “Treating or managing any new virus or condition is a challenge for healthcare professionals whose priority is always trying to deliver the best possible care for their patients. The College is delighted to be working with both NICE and SIGN to develop this guideline. It aims to support GPs and other healthcare professionals to ensure all patients with long term effects of Covid-19, including those diagnosed in the community irrespective of whether they received a positive test or not, can be cared for in the best possible way, based on the latest evidence.”

It is expected that the guideline on the longer term patient impact of Covid-19 will be published by the end of the year.

1. Written evidence from the House of Lords’ inquiry ‘Long COVID: Evidence, recommendations and priority research questions (COV0050).’ https://committees.parliament.uk/writtenevidence/12345/pdf/

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https://twitter.com/user/status/1313151608663027712

 

This is going to be important. Are they going to hire some awful individuals to write the guidelines? Are they going to write that covid is definitly not ME when they have no evidence for that statement. Are they going to recommend the mus clinics for those with no physical damage to their organs? Long covid folks better watch out.

Ps if they set up proper services, consultants, clinics, for long covid, M.E folks are going to demand the same services so I can't see that happening.

 

Maybe I'm being even more of a cynical curmudgeon than usual today but......


Yippee something new let's develop.a guideline. Don't you first need to data gather, observe and understand it?

I get that you want to do something to ease suffering and improve outcomes for people while you gather data & observe, of course. They just don't seem to mention that. Or I missed it?

The danger with developing guidelines willy nilly is that people will go and believe them over the evidence in front of their own eyes. As we know, once a guideline is in place it's hard to shift, no matter how many get hurt.

It seems that being seen to be doing something constructive is more important than doing something properly.

 

It would be funny if NICE, not blinded by prejudice and mislead by misinformation, produces an accurate description of ME/CFS while attempting to describe this new and strange syndrome often seen in long covid patients.

 

Media coverage: GP Online:

https://www.gponline.com/nice-sign-rcgp-develop-rapid-guidance-long-covid/article/1696367

NICE, SIGN and RCGP to develop 'rapid guidance' on long COVID

By Emma Bower on the 5 October 2020

New guidance on the persistent effects of COVID-19 on patients, or long COVID, is to be developed by NICE, SIGN and the RCGP.

 

Media coverage: Nursing Times:

https://www.nursingtimes.net/news/c...pment-for-treatment-of-long-covid-05-10-2020/

New guideline under development for treatment of ‘Long Covid’
05 OCTOBER, 2020 BY MEGAN FORD

 

Media coverage: PULSE:

https://www.pulsetoday.co.uk/news/coronavirus/nice-set-to-publish-rapid-guideline-on-long-covid/

NICE set to publish rapid guideline on ‘long Covid’

GPs will get access to dedicated advice for how to treat patients suffering with the long-term effects of Covid-19...

 

If the patient community fights tooth and nail every step of the way and keeps the quacks away, there's a chance this could be moderately competent with limited disaster potential. This means constant vigilance, especially keeping anything BPS-related out of order and actually using the disastrous handling of ME and chronic illnesses as a lesson learned the hard way.

A very tiny small chance of that. I don't know about SIGN but guidelines on chronic health problems from the RCGP and NICE are basically like guidelines on sheep safety from a band of wolves. Hard to imagine anyone with a worse track record on this topic.

Maybe this will be a learning experience. But if there's one thing I have observed over the years as a chronic illness patient it's that the ability to learn from experience is not exactly in abundant quantities in medicine. Outside of acute care anyway. Especially with COVID, since many patients were dying anyway, lots was experimented on quickly in ways that aren't open to interpretation. When problems make machines go beep, medicine works. When machines stay silent, use that silence to pray your life isn't worth less than the ego of whoever is making life and death decisions based on personal opinions.

I expect full BPS. Maybe I'll be surprised for once. I would very much like to be surprised about this. It never happens, because people are too predictable about these things. Not exactly ideal when it comes to learning things.

 

The clinics are talking about pacing, but they mean increasing exercise at your own pace not trying to keep within your limits. The problem with ME is trying to stop yourself doing too much and I am sure it is the same if you have long covid

I am amazed by all these long covid people talking about symptoms I get regularly but no one ever mentions with ME. The random rashes that suddenly appear to torment me the disappear just as quickly for instance. The blood pressure problems, breathlessness that doesn't come when I climb the stairs when I feel well but reduces me to a heap when I am lying down feeling ill and of course the fact don't experience fatigue but fatiguability.

Also dysautonomia is an integral part of ME probably caused by viral brain damage not a separate thing some people get.

 

Media coverage of NICE announcement re development of a joint guideline: Evening Standard:

https://www.standard.co.uk/news/health/nhs-to-officially-recognise-long-covid-a4564086.html

NHS to officially recognise 'Long Covid' and advise doctors on how to treat persistent symptoms

SEAN MORRISON 5 October 2020

 

It is interesting that there seems to be concern about inconsistent care within a group with a diverse range of symptoms. There seems to be no awareness that by addressing this, in the way in which they are likely to, they will create inconsistent care within the wider patient population.

Presumably they hope no-one will notice.

 

Information on NICE process for developing rapid guidelines:

https://www.nice.org.uk/covid-19

Guidelines about COVID-19

We've developed 22 rapid guidelines with NHS England and NHS Improvement (NHSE&I) and a cross-speciality clinical group, supported by the specialist societies and royal colleges. These guidelines were developed quickly using a different approach to normal and we’re keeping them under review.

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

 

https://twitter.com/user/status/1313433518329004034

 

PDF:

https://committees.parliament.uk/writtenevidence/12345/pdf/

Professor Trisha Greenhalgh, Dr Emma Ladds, University of Oxford; Dr Matthew Knight, Watford General Hospital; and Dr Deepak Ravindran, Royal Berkshire Hospital – Written evidence (COV0050)

‘Long Covid’: evidence, recommendations and priority research questions

The authors of this piece of written evidence are:

Prof Trisha Greenhalgh FMedSci
Dr Emma Ladds MRCGP Academic General Practitioners University of Oxford

Dr Matthew Knight FRCP Respiratory Consultant Watford General Hospital
Dr Deepak Ravindran FFPMRCA Consultant in Pain Management Royal Berkshire Hospital, Reading


11 page PDF attached

 

@Jonathan Edwards what do you think about this?

 

Written evidence document page 9:

https://committees.parliament.uk/writtenevidence/12345/pdf/

(...)

 

An awful lot of words that say nothing more than anybody could make up without knowing anything more than they had read in the newspaper.

The continuing assumption that foursome reason people must need exercise is bonkers.

The whole thing is entirely driven by the politics of empire building. In this case the GP or primary care empire.

Interesting to seems far as I can gather, that there is nomination of psychologists or CBT.

 

Written evidence document pages 4-5 (reference to " myalgic encephalomyelitis" in second paragraph):

[Bolding as per document]

https://committees.parliament.uk/writtenevidence/12345/pdf/

 

Not sure how even tier 1 is going to work given it states patients must be given accurate information about the condition, and this seems in short supply.