UK: The Clinical Post COVID Society

https://journals.sagepub.com/doi/full/10.1177/27536351241231351

Open access
Editorial
First published online February 9, 2024

A New Professional Society for Post-COVID Condition and Other Post-Viral Conditions
Manoj Sivan M.Sivan@leeds.ac.uk and Melissa Heightman
https://doi.org/10.1177/27536351241231351

A new professional society for clinicians working in post-COVID condition (Clinical Post-COVID Society) has been set up to provide a professional network to help advance this field of medicine (www.clinicalpcs.org.uk). Post-COVID condition or long COVID is a novel multisystem condition that has affected at least 2 million individuals in the UK and over 200 million individuals worldwide.1 The condition, in some, can evolve into a long-term condition (persistent long COVID), and current estimates are there are more than 750 000 individuals in the UK alone who have been experiencing symptoms for more than 2 years.2 The worldwide estimate for persistent long covid is estimated to be over 50 million.

[..]

Given the overlap of long COVID with other similar chronic conditions such as Chronic Fatigue Syndrome/Myalgic Encephalitis and Fibromyalgia, we expect the society will be of interest to clinicians managing these related conditions. Clinicians working in the wider field of other post-viral conditions will also be interested in bringing their years of expertise to this society to share knowledge and develop effective management strategies for these conditions. The society, even though will attract UK clinicians to start with, will be open to an international audience and will aim to become a global community of clinicians in this field.

 

"Post-COVID condition or long COVID is a novel multisystem condition"

Novel if you ignore ME/CFS.

"Chronic Fatigue Syndrome/Myalgic Encephalitis"

And they can't even get the name right.

 

Not encouraging:

"The Clinical Post COVID Society is a joint initiative between NHS England and British Society of Physical and Rehabilitation Medicine (BSPRM)"

 

"Membership of the society will be open to all health and care professionals involved in the management and care of patients with long COVID.

In addition, membership will also be made available to those individuals who have responsibility for commissioning and managing long COVID services.

Patients (individuals with lived experience of the condition) will form a working group to provide strategic direction to the work of the society. Patients will also work with professionals and academics in promoting research and further our understanding of the condition."



"Given the overlap of long COVID with other similar chronic conditions such as Chronic Fatigue Syndrome/Myalgic Encephalitis and Fibromyalgia, we expect the society will be of interest to clinicians managing these related conditions.

Clinicians working in the wider field of other post-viral conditions will also be interested in bringing their years of expertise to this society to share knowledge and develop effective management strategies for these conditions.

The society, even though will attract UK clinicians to start with, will be open to an international audience and will aim to become a global community of clinicians in this field."

 

A bit like a joint initiative between a white elephant and a dead parrot then?

I don't think there is any greater need to be threatened by this group than the OAPs who go Nordic walking on Hampstead Heath on a Tuesday morning.

 

Oh beep. I think this isn't a 'BACME' but it is an official attempt to basically create a new department/discipline and the various 'colleges' that go with it.

And it look like rehab medicine are taking the lead (it seemed like the sudden submission of one of them to the ME guideline when she'd never been interested in it before, seemingly mainly on the basis that as her submission stated 'it will overlap with the LC guideline, showed an 'ambition' for that area).

"Hence, with the help and vision of NHS England, a new professional society has been set up under the banner of the British Society of Physical and Rehabilitation Medicine (BSPRM), UK’s professional society for physicians and other clinicians involved in providing rehabilitative care in long-term conditions (irrespective of organ system involved)."

It talks of the 100 clinics or something, and of course as we know many of those are indeed actually what were ME clinics and then took on LC. So it sounds like something to over-arch all of that network.

And I'm assuming 'professional society' could mean basically more official qualifications and career path and so on vs the BACME type group?

"There will be a diverse multidisciplinary clinical leadership team to reflect the varied expertise needed to care for patients with long covid. The society will facilitate developing position papers on best practices and link them with guidelines being developed by various stakeholders, including the National Institute for Health and Clinical Care Excellence (NICE). The society will host national and international courses and conferences in this field of medicine and develop educational and training packages for interested clinicians."

 

I'm glad that you've said this because the literature makes it sounds pretty ambitious and deal-done

 

Shudder

 

I have never heard of the British Society for Physical and Whatsit.
Physical Medicine in the UK officially died in 1973. So this is either a group of Chelsea Pensioners in bathchairs or Rip van Winkels. They might get thirteen people turn up to an annual general meeting I suppose.

 

phew!

 

The term "Myalgic encephalitis" is included under SNOMED CT UK Edition's "National Health Service realm language reference set (clinical part)" as an Acceptable Term and is coded under Synonyms to SNOMED CT Concept code: SCTID: 52702003. But I agree, "encephalomyelitis" would have been preferable and consistent with NICE.


https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

Chronic fatigue syndrome (disorder)

Details Tab:

SCTID: 52702003 , Primitive , Active

National Health Service realm language reference set (clinical part)

Term Acceptability (GB)

F Chronic fatigue syndrome (disorder) Preferred
S Chronic fatigue syndrome Preferred
S ✔ Benign myalgic encephalomyelitis Acceptable
S ✔ CFS - Chronic fatigue syndrome Acceptable
S ✔ Iceland disease Acceptable
S ✔ ME - Myalgic encephalomyelitis Acceptable
S ✔ Myalgic encephalitis Acceptable
S ✔ Myalgic encephalomyelitis Acceptable
S ✔ Myalgic encephalomyelitis syndrome Acceptable
S ✔ Myalgic encephalopathy Acceptable

-------------------------

https://www.clinicalpcs.org.uk
https://www.clinicalpcs.org.uk/about-us/
Clinical Leadership Team

Appears to have NHS funding for the first 12 months.

 

At least the idea fundamentally has some merit and could still be prodded in the right direction. It's just disappointing to see them work from foundations that have long been revealed to be quicksand at the best of times. Maybe it's worth working to see if we can influence them the right way. Generally speaking, clinicians and researchers who actually mean well respond to criticism and adapt. It's quickly obvious which kind they are.

I'm curious who is meant by "clinicians who manage those conditions". Because whew can that be like being handed a sharp knife by its blade.

 

Merged thread

I have received a message indicating that a new professional organisation is being set up (linked to BACME) for post Covid and other post-viral conditionss under Physical Medicine and Rehabilitation with the help of NHS England. The message suggests that the sociaety would be of interest to professionals involved in ME/CFS.

It says: "The much-needed approach of 3 Rs—Recognition, Rehabilitation, and Research – will be the emphasis of this new professional society"

My reply to a number of interested parties receiving the email was:

I see that as very disappointing. We have no evidence for physical therapy or rehabilitation being relevant to the management of Post Covid illness as yet and if ME/CFS is anything to go by nor will we.


Physical medicine does not now exist as a medical speciality. Rehabilitation Medicine seems a very inappropriate home. Certainly it is entirely inappropriate for ME/CFS both on general principles and in the light of comments made by rehabilitationists at the NICE Guideline Round Table Meeting. It is the ‘old way’ so many of us have been fighting to change because it didn’t work.


People are entitled to set up whatever professional bodies they like but I am concerned that NHS England should be supporting this.


Jo

 

This is really dreadful news.

 

Blows rain down on us.

 

My severely impaired brain has given up any attempt at following the rules of grammar such as they are.

I’m sorry. I am sure it makes reading more difficult for others, I eventually got sick of only chatting once every three months when the fog lifts a little.