UK - NICE guideline on Long Covid

There is a link to comments on comments and I think they basically dismiss the relationship with ME but I've only skimmed through very quickly

https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation-2

They summarize comments as
"Several stakeholders expressed concern that CFS/ME has not been mentioned. Although this is out of scope they commentedon similarities in symptoms and raisedconcerns that people will be considered as having post-COVID syndrome and not CFS/ME and may receive inappropriate treatment e.g. graded exercise therapy(see comment 15)"

Note the CFS/ME which indicates where they are coming from and in response they say:

"The panel discussed whether this should be added and considered that consideration of differential diagnoses was accounted for in recommendations in section 2 and 3 and nothing specific about ME/ CFS needed to be added to the guideline"
 
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.
To tackle this new and complex condition optimally, we propose that all clinics caring for people with persisting symptoms after acute COVID-19 provide a thorough physical assessment by a consultant physician from a medical specialty, addressing first and foremost identification and management of any organ or multisystem dysfunction. Psychological aspects of disease should be managed as part of the recovery process, but not seen as the primary treatment focus for all. Individualised rehabilitation plans are crucial— not a one-model-fits-all approach. Long COVID healthcare services are also needed for children and young people. There should be greater inclusion of people with long COVID in clinical trials for potential COVID-19 treatments, including early interventions in the acute phase to prevent long-term complications, and there is a need for more long-term cohort studies of long COVID. Additionally, a nationwide register should be established of people with long COVID, and governments should report the data from this register with COVID-19 outcome data.

Guidelines must represent the complexity of long COVID, including the areas where evidence is still emerging. Hasty attempts to rename the condition or compare it to other conditions is a disservice to thousands of people, and could result in missed pathology to the detriment of the patient. Comprehensive long COVID guidelines are essential to prevent an epidemic of longterm, chronic disease as a result of early mismanagement of pathology, and the potential implications of such an epidemic for health systems and economies
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In the guideline there are implicit assumptions about the nature of long COVID, which could result in some likening it to post-viral fatigue and may lead to providers overemphasising a psychological component. At the very early stage of any new disease, it is unwise to presume parallels with other conditions
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Authors, Robin Gorna, Nathalie MacDermott, Clare Rayner, Margaret O’Hara, Sophie Evans, Lisa Agyen, Will Nutland, Natalie Rogers, Claire Hastie

ETA: Added second quote.
 
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Gecko said:
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.
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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.

InitialConditions said:
Maybe they said Covid guideline committee, not the long-Covid panel.
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Trish's tweet in the first post of this thread says
Delighted to be part of this new initiative between NICE, SIGN and RCGP to develop a #longcovid guideline
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Adrian said:
There is a link to comments on comments and I think they basically dismiss the relationship with ME but I've only skimmed through very quickly

https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation-2

They summarize comments as
"Several stakeholders expressed concern that CFS/ME has not been mentioned. Although this is out of scope they commentedon similarities in symptoms and raisedconcerns that people will be considered as having post-COVID syndrome and not CFS/ME and may receive inappropriate treatment e.g. graded exercise therapy(see comment 15)"

Note the CFS/ME which indicates where they are coming from and in response they say:

"The panel discussed whether this should be added and considered that consideration of differential diagnoses was accounted for in recommendations in section 2 and 3 and nothing specific about ME/ CFS needed to be added to the guideline"
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They do also say:
NICE has developed separate guidance on the management of ME/ CFS and people who have ME/ CFS should be managed according to the appropriate care pathway.
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Still, I can't comprehend why it's fine to mention POTS in the guideline but ME is out of bounds.
 
Andy said:
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
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Ah yes good spot Andy.
 
Andy said:
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
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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.
 
Jonathan Edwards said:
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.
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I wonder if there are a fair few with Long Covid from the medical community who have a strong belief that ME isn't real or is due to psychological weakness and hence don't want links to be made. An alternative view is that there are those pushing CBT/GET who realize they are discredited so see opportunities with Long Covid
 
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.
 
Adrian said:
I wonder if there are a fair few with Long Covid from the medical community who have a strong belief that ME isn't real or is due to psychological weakness and hence don't want links to be made. An alternative view is that there are those pushing CBT/GET who realize they are discredited so see opportunities with Long Covid
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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.
 
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Andy said:
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.
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Interesting. They're right to bemoan the lack of patient inclusivity and the "misguided" treatment that some of them have received, but:
At the very early stage of any new disease, it is unwise to presume parallels with other conditions
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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.
Individualised rehabilitation plans are crucial - not a one-model-fits-all approach.
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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.
 
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strategist said:
Clearly at some level the long covid community is making a deliberate choice to keep some distance from ME/CFS.
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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. :rolleyes: I've only ever had thanks for the reminder. :)
 
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