UK - NICE guideline on Long Covid

Critique of the guideline published in the Lancet, https://marlin-prod.literatumonline.com/pb-assets/Lancet/pdfs/S0140673620327057.pdf

They don't want to acknowledge the connections to ME though, while wanting many of the same things that we do.

Authors, Robin Gorna, Nathalie MacDermott, Clare Rayner, Margaret O’Hara, Sophie Evans, Lisa Agyen, Will Nutland, Natalie Rogers, Claire Hastie

ETA: Added second quote.

 

AfME's response, https://www.actionforme.org.uk/news/nice-rapid-response-guideline-on-long-covid/

 

So no Lynne Turner-Stokes or Trisha Greenhalgh - wonder why Greenhalgh said she and Turner-Stokes were on the guideline committee...

Trudie Chalder however is a member.

 

Maybe they said Covid guideline committee, not the long-Covid panel.

 

It says it's the "List of expert advisory panel members", which may or may not mean that it is the full list of everyone involved.

Trish's tweet in the first post of this thread says

 

They do also say:

Still, I can't comprehend why it's fine to mention POTS in the guideline but ME is out of bounds.

 

Maybe more to do with who was on the Covid guideline committee?

 

Ah yes good spot Andy.

 

I guess there may be confusion about who is writing what document. Turner-Stokes and Wade have produced a document for the British Society of Rehabilitation Medicine on Long Covid - which may be why they were invited to comment of the ME/CFS draft.

 

I am amazed that this appears in the Lancet (if it did). It seems to be a lay group who want to invent a new disease called Long Covid based on the same sort of phoney science we have seen so much of for ME. The call for including masses of symptoms in criteria is familiar and completely inappropriate. Criteria for diseases do not include all the possible manifestations. Why do they want tailored multidisciplinary care when nobody knows what to do other than rest? They even mention mast cell activation.

Why do we need a new disease when we already have one that fits the bill?
Clearly to these people because ME is psychological.
Hopefully sooner or later the Long Covid community will come to realise that it would be more sensible to join forces with people who have had this illness for forty years rather than try to invent a new one.

 

I suspect the long covid community is in a way, making the bet that they'll be able to figure out the disease quicker without the taint of ME/CFS. The similarities are obvious and undeniable. Clearly at some level the long covid community is making a deliberate choice to keep some distance from ME/CFS.

 

Perhaps the problem for those with 'Long Covid' is that if they want attention they don't want to acknowledge that there are already (in the UK) about 150,000 people in the queue who have been waiting a while.

 

Ironically the decision to distance themselves from ME/CFS could quickly turn out be disastrous. The BPS brigades are waiting with open arms to welcome long covid patients for holistic multidisciplinary biopsychosocial flexible rehabilitation. Meanwhile ME/CFS patients are slowly making progress and freeing themselves from the BPS influence.

 

Those who made most noise about this initially did seem to have medical connections, unclear symptoms, and no, or no positive, test.

 

Interesting. They're right to bemoan the lack of patient inclusivity and the "misguided" treatment that some of them have received, but:

It's even more unwise to disregard what is already known about a condition that commonly presents post-virally and has an extraordinarily high level of symptomatic overlap.

Not only is the assumption that rehabilitation is not only of utility but "crucial" a harmful one, but individualisation is highly premature.

Also, I haven't been reading much long-COVID material, so I'm not sure if it's been addressed, but one of the authors' three mentioned theories (viral persistence) seems to me to be unlikely for three main reasons: firstly, because such persistence has not been observed with other coronaviruses, such as SARS-CoV-1 and MERS-CoV; secondly, because this is a global pandemic, there would be case reports from all across the world of reactivations/recrudescences; thirdly, because the detection of viral RNA by rtPCR does not definitively indicate the presence of infectious virus (merely of the persistence of genetic material). The second theory, autoimmunity, also seems of doubtful relevance in the majority of cases.

 

Source, https://www.thelancet.com/lancet/article/s0140-6736(20)32705-7

 

I've found the #LongCovid people on Twitter have been very glad of help from the ME/CFS community and acknowledge that. I try and keep an eye on some of them and stay in touch. I'm very glad that some of them seem to be making improvement over time, some after 8 months. Mainly I try to remind them not to go too fast on the walking (step counts) and exercising. I've only ever had thanks for the reminder.