U.K. National Institute of Health Research review - Living with COVID-19, Part 1 Oct. 2020, Part 2 March 2021

This post and others on this thread were moved from possibility of ME or PVFS after Covid-19, long Covid
https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-114#post-295527

NIHR review:
Living with Covid19
Published on 15 October 2020
doi: 10.3310/themedreview_41169
A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).
https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

Brief news item here
https://www.bbc.co.uk/news/health-54540544

 

To add to @Mike Dean's post, there's also one from the Grauniad:

"Lasting symptoms may not be down to a single syndrome but several different ones"

https://www.theguardian.com/world/2020/oct/15/long-covid-what-we-know-so-far

 

Of course the same could be true for ME/CFS and PVS too. Despite all the lumping/splitting arguments, the fact is that these are umbrella diagnoses.

 

Just skimmed the references...

Murray, A., Gerada, C., Greenhalgh, T. (2020) We need a Nightingale model for rehab after covid-19 HSJ April 8 www.hsj.co.uk/commissioning/we-need-a-nightingale-model-for-rehab-after-covid-19-/7027335.article

edited to add: Seems to be a typo?
TG not mentioned as an author in the linked article.

 

These are mentioned under Resources:

Fatigue

Physios for ME (Myalgic Encephalomyelitis) have produced guidance on the potential complication for Post-Viral Fatigue Syndrome (PVFS). www.physiosforme.com/covid-19

The (Myalgic Encephalomyelitis) ME association has produced a leaflet on post-viral fatigue (PVF) and Post-Viral Fatigue syndrome (PVFS) following coronavirus infection. https://meassociation.org.uk/wp-con...-Following-Coronavirus-Infection-30.04.20.pdf

 

The BMJ - Long covid could be four different syndromes, review suggests

A team of researchers and doctors reviewed current evidence and interviewed post-hospitalised and non-hospitalised patients and reported that long covid did not seem to fit as one syndrome. They suggested that people experiencing long term effects of covid-19 may have different syndromes such as post-intensive care syndrome, post-viral fatigue syndrome, and long term covid syndrome.

 

I find this strange - perhaps it's the wording or just my brain.

It seems to assume that all syndromes are known or that everything, even if it's something never seen before, should be shoehorned into the boxes where everything else fits.

By all means compare & bear in mind lessons learned from past disorders & syndromes. However by separating out into arbitrary syndrome definition (arbitrary in this case at least) you may miss vital information.

Important clues could exist if one were to consider what could cause both this symptom and that. Rather than assume that, because those symptom clusters can appear independently in some people, those symptoms are not closely connected in this case.

 

That's odd.

Also, there was a Science Media Centre briefing on the NIHR report: https://www.sciencemediacentre.org/nihr-launches-dynamic-themed-review-on-long-covid/

That's interesting too.

 

Kate Kelland's piece on the NIHR report promoted by the SMC:

https://mobile.reuters.com/article/amp/idUSKBN26Z3AB

Nothing interesting in there imo.

 

Moved post

https://twitter.com/user/status/1318436597361221632


more comments follow in this Twitter thread.

 

I'd just assumed that they spoke to more people than that. The had 14 members of the steering group.

 

BBC report says:

NIHR Review says:

14 in the Steering Group (all named)

13 in the Reference Group (all named bar one)


NIHR Review also says:

 

https://twitter.com/user/status/1318439563816292352

https://twitter.com/user/status/1318615656099610626


No reply from Prof Greenhalgh.

 

Moved post

There is a LOT to unpack here and this document probably deserves its own thread but there are interesting word choices used here:

https://twitter.com/user/status/1371614501607514113


Alternative reading of those pages:

The document: https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/

A bit of a swing and a miss that in brain fog they miss out on ME despite having shown surprising cogent understanding elsewhere. I wonder what that says about the NICE guidance that they are referred to here as mostly a done deal. Maybe nothing, but given how hotly political this topic is, I doubt.

 

Skimming the rest and it's better than what came before, still lots of work ahead. Neurological symptoms are still badly misunderstood and seem poised to get lost in the FND black hole unless rational people get involved to stop this.

Frankly most of this stuff should have been obvious a year ago, this is mostly playing catching up, still far behind the curve. Too much attempts to describe things without listening to patients. As usual. But it is better. Which is rare.

 

Moved posts

Has this been posted?


https://evidence.nihr.ac.uk/wp-content/uploads/2021/03/NIHR_COVID_REPORT_FINAL-150321-1_1_.pdf
NIHR press release:
https://www.nihr.ac.uk/news/nihr-publishes-second-themed-review-on-long-covid/27232

Looks dispiritingly familiar-mentions exertion intolerance but assumes that lots of nice rehab and exercise/psychology is still the best thing- just don't call it GET. It is pretty much the worst compromise interpretation of new ME NICE guidelines. It even thinks IAPT results are good.

 

From p4 of above
"We conclude that the journey of Long Covid is not well understood and it is important to continue to listen to the lived experience as we move into the second year of this new disease"

 

On the plus side (joke):
"Improving Access to Psychological Therapies (IAPT) programme. Clark (2018) reported that 50% of people receiving IAPT recover and two-thirds show significant improvement."
OK that (presumably - can't access the cited study*) is what the patients reported in the questionnaires**.


*Clark, D.M., (2018) Realising the mass public benefit of evidence-based psychological therapies: the IAPT program. Annual review of clinical psychology, 14, pp.159-183. https://www.annualreviews.org/doi/abs/10.1146/annurevclinpsy-050817-084833

**
https://mindhacks.com/2009/02/27/sir-humphrey-teaches-questionnaire-design/

 

I am not so sure. This looks to me like a perfect recipe for doublespeak.
Exercise tolerance/intolerance should not be seen as binary concept. A better term might be “symptom-titrated physical activity”. Using the term physical activity instead of exercise therapy also highlights the need to think about exercise as part of a person’s day to day life and the need to pace all activity. Pacing has parallels with elite athletes who cannot train to their maximum every day of the week and need to plan when to fit in the most demanding session and the lighter activity to complement it.

So managing LongCovid is a bit liker elite athletes on their not so tough days?
The obsession with activity as a means to getting better continues unabated with a mental contortion that seems to deal with the problem of 'exertion intolerance' - by saying you don't have to call it that.

It could have been worse maybe if it just said everyone should exercise but I think it is in a sense even worse because it says yes we know all about PWME having trouble but change the words and hey presto everyoneshouldexercise. It's all OK therapists, we can carry on exactly as before - whoopee!