UK: Long COVID SOS News

It’s pretty bad. Among many things they:

* define “PESE” as “exhaustion”
* In 7 pages, a single mention of “CFS” which is a link to an Australian youtube channel about how the youtuber recovered from ME/CFS
* No mention of severe disability, and a recommendation to have a gradual return to work / school
* Recommend CBT for insomnia
 
Some of it's not bad but it's peppered with over-confident and under-evidenced statements. e.g. that "activity can safely be increased" once you've had several weeks or months of pacing without crashes.

Also I wish the factoid about Long Covid having "200 symptoms" would go away. I think it just gives GPs the impression that patients are attributing every little ache and pain to a phantom problem.
 
Had a glance at this and SOS are certainly playing on the edge by collaborating with the RCGPs and the Post Covid Society. Makes me wonder how much they actually know about the reputation and previous agendas of these groups?

There is some good points in here but agree with Yann's critique. Why on earth would one put CFS Health as a recommendation? But these groups follow a rehab model which is rife with crap and outdated beliefs. So maybe to be expected?

It's not the first time they've courted controversy. They were involved in the appalling Delphi questionnaire with FND psychiatrist van Der Felz Cornelis. Also twitter exploded on them when they appeared unmasked at the Long Covid Conference where the Post COVID Society launched and said how excellent it was when it was a load of rehab and REGAIN rubbish.

It is odd that with about 50% of people with Long Covid they don't mention ME? But it is in line with there history, I knew someone who was in SOS and they said in the early days they were told by someone high up not to have anything to do with ME as they were trouble makers and they wouldn't get any funding so they took a policy of not associating with ME. :ill:
 
Sparkly Unicorn said:
...I knew someone who was in SOS and they said in the early days they were told by someone high up not to have anything to do with ME as they were trouble makers and they wouldn't get any funding so they took a policy of not associating with ME. :ill:
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Then there are various lines of propaganda constructing emergent aversion to ME / CFS communications and alienating the SOS Covid band too

It sounds to me like this band was intentionally misled to provoke disruption or else it just urgently needs a leadership-rethink based on the primary care recommendations against unmonitored and uninvestigated struggle with muscle that may involve nerve damage, however advertised as crucially helpful to the most desperate

i was surprised to see that paper (published in the GP trade journal) had T.Greenhalghs name attached, but apparently it was writtten by colleagues, not herself, and I'd like to think its based on quality evidence

My bias being for its insistence that it behoves all therapists (and their clients) to obtain a physiological risk assessment before proceeding to tax muscle (tax muscle as done in sports medicine)

But i don't now know how many Long Covid cases require a GP to assess risk as explained (how to assess for a damaged motor-nerve) - so I'd say all

But is there risk of damaged motor-nerves in Covid and / or in Long Covid ?

Eleanor said:
Some of it's not bad but it's peppered with over-confident and under-evidenced statements. e.g. that "activity can safely be increased" once you've had several weeks or months of pacing without crashes.

Also I wish the factoid about Long Covid having "200 symptoms" would go away. I think it just gives GPs the impression that patients are attributing every little ache and pain to a phantom problem.
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Also the "medical" counter-claim (somewhere recorded here) made to GPs says that:

- the higher the number of symptoms the more the need of such behavioural modifications

So a GP is getting catastrophically clashing directions re the client who reports many symptoms and naturally wants to walk more. The GP journal needs to clarify to GPs which is the counter-claim
 
Yann04 said:
Long COVID SOS, just published a 7 page GP leaflet with the collaboration of Royal College of GP’s and the Clinical Post COVID Society.

https://www.longcovidsos.org/_files/ugd/8bd4fe_2c32c19ec66c4396bbaedae8a42fe167.pdf
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I’m not up with the LC groups /landscape

who are LC SOS ?

And what other groups are there ? Are there different ones taking different angles and did this one have certain power or angles or is it attracting certain types?

I’m intrigued it’s an actual charity and was set up by June 2020. Did it manage to get charity status by then?

if the pandemic started in March 2020 then even going by 4minths (and most in those early stages might have had access to covid tests) then June 2020 is only 3months after March 2020
 
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bicentennial said:
Then there are various lines of propaganda constructing emergent aversion to ME / CFS communications and alienating the SOS Covid band too



It sounds to me like this band was intentionally misled to provoke disruption or else it just urgently needs a leadership-rethink based on the primary care recommendations against unmonitored and uninvestigated struggle with muscle that may involve nerve damage, however advertised as crucially helpful to the most desperate
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It's a good point @bicentennial about alienation. It's not the best start for a charity. But it does look an an opportunity was taken by someone with an agenda to muddy the waters and perpetuate the PR that ME activists are 'troublenmakers'

I suppose the question is how much this has coloured the charity? It can't be easy to set up a group in those early days, especially if ill. Trial by fire.

But it's 5 yrs on and the mistakes made in the GP leaflet shouldn't have been made. So that does raise the question of leadership.

Yet if they've alienated themselves from patients and ME in particular they aren't going to be aware of serious previous issues.

From their website they seem to do more top tier involvement with researchers, NHS and societies who like the rehab model. But the danger is they lose their independence and become a convenient charity for people to box tick their public involvement. And the same mistakes are made.

I think one of the most pressing issues of the leaflet is that it doesn't convey the seriousness or severity that Long Covid can take. So Drs aren't going to be aware of the care and involvement needed.
 
bobbler said:
I’m not up with the LC groups /landscape

who are LC SOS ?

And what other groups are there ? Are there different ones taking different angles and did this one have certain power or angles or is it attracting certain types?

I’m intrigued it’s an actual charity and was set up by June 2020. Did it manage to get charity status by then?

if the pandemic started in March 2020 then even going by 4minths (and most in those early stages might have had access to covid tests) then June 2020 is only 3months after March 2020
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Had a quick peak on charity commission and they were registered in May 2022. Getting charity status in June 2020 would have been superhuman!

https://register-of-charities.chari...y-search/-/charity-details/5190647/governance
 
I can’t remember anything much about this particular organisation.

Where a charity is promoting ideas that are unhelpful to people with say LC or those with other chronic illnesses, it’s usually because leadership happens to subscribe to an equally unhelpful ideology around illness and disability.

When people become sick they have the same politics that they had before. That’s not likely to be benign towards disabled people.


A charity can be made up of once or present sick people who genuinely believe that sucking up to authority will eventually amount to better treatment for a given population. That might come about with the idea that the reason disabled people don’t get proper treatment is that they’re not cooperative enough. With those treating them poorly.

If the ambition includes being a real teachers pet of a charity, taking up space where otherwise opposition to the authority line might land, there’s plenty of encouragement and rewards to go around. So that’s an incentive.

Or maybe a charity wasn’t launched for the subjects at all.
 
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Sparkly Unicorn said:
.........if they've alienated themselves from patients and ME in particular they aren't going to be aware of serious previous issues.

......... I think one of the most pressing issues of the leaflet is that it doesn't convey the seriousness or severity that Long Covid can take. So Drs aren't going to be aware of the care and involvement needed.
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The charity is made up now as the chosen, funded, patient participation group under the Helsinki guidance on PPE ( Patient Participant Engagement ). Done

The Clinical Post-Covid Society sounds like its modelled on or by BACme

It sounds like a monopoly unless the clinicans put out open invites to other PPE groups i.e. all LC charities (UK). The next tranche of funding is being secured

The Royal Colleges seem to be in the throes of resolving cognitive dissonance. My view is that there are no 2 ways about it and expedience will decide in the crunch

The missing info on the range of LC prognoses and risks is urgently need by LC SOS Members and their own GPs whom they will be leafleting. If all the Members are suitable for a quick-fix rehab then they can't call themselves Long Covid.

But the rehab program knows from us how to frame a national network of clinics for dodgily diagnosed cases by excluding the real cases (Dr.Spickett 2013) and play footsie with GPs who dont want to do the diagnostics either (to date)

2024 The GPs are tasked by TG et al to do the exercise-rehab assessments and sift out those who have Covid damage. The Rehab movement knows its liability

This is what I make of the profiles available
 
I had complained to them (Long COVID SOS) on Bluesky. This is the response I recieved:
Hi Yann, thanks for taking a look at our leaflet and raising these points. We have passed your feedback to our leaflet volunteers.

To clarify, the leaflet defines PESE as “disabling & often delayed exhaustion disproportionate to the effort made” - a widely referenced definition, albeit 1 of many
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There are references to appropriate support for the plethora of impacts severe LC can have, including loss of function, financial difficulties etc albeit a short leaflet. Work specific section there as GP’s often have to recommend adjustments & sign fit notes where pwLC want to try a return to work.
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Appreciate this reply doesn’t answer all your points - hence passing your feedback to leaflet volunteers- but wanted to let you know we have seen your response and acknowledged jt.
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—- I reply about failing to include severe people, their response:
Thanks for taking the time to note this; we’ll pass it on. I wasn’t on the team so unsure if RCGP maybe wanted to reserve severe guidance for an ME/CFS leaflet and/or wait for higher quality guidance to be developed for severe patients following Maeve’s inquest. Needed but shld be led by ME experts
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I reply about problems with RCGP, their response:
Thanks for the information. We believe attitudes are changing slowly but we know there is a lot of work to be done. We appreciate all the work pwME have done to educate, inform and advocate and we are committed to learning from the ME community
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All from this thread
 
bicentennial said:
The charity is

The Clinical Post-Covid Society sounds like its modelled on or by BACme

It sounds like a monopoly unless the clinicans put out open invites to other PPE groups i.e. all LC charities (UK). The next tranche of funding is being secured

The Royal Colleges seem to be in the throes of resolving cognitive dissonance. My view is that there are no 2 ways about it and expedience will decide in the crunch

The missing info on the range of LC prognoses and risks is urgently need by LC SOS Members and their own GPs whom they will be leafleting. If all the Members are suitable for a quick-fix rehab then they can't call themselves Long Covid.

But the rehab program knows from us how to frame a national network of clinics for dodgily diagnosed cases by excluding the real cases (Dr.Spickett 2013) and play footsie with GPs who dont want to do the diagnostics either (to date)
Click to expand...

It does look like the Post COVID Society is based on a BACME model. They are both presenting at each others conferences and strongly invested in the rehab model. Not sure why SOS have rehabilitation as part of their tag line?! It's very out of date and has problematic connotations.

Has a look on the CPCS website and it looks very closed shop and a way to dominate the clinical landscape and culture whilst keeping the same nonmedicalised lite approach.
 
Thanks @Yann04 for including their responses. Interesting, but it doesn't seem any of them have any experience of severe Long Covid or ME.

Blimey hope they aren't going to be doing a severe ME leaflet!

I'm not sure they realise that the term PESE was to avoid it being reduced to exhaustion. It's symptom exacerbation which can be multisystem not just fatigue.
 
The "Clinical Post-COVID Society" is an initiative of the British Society of Physical and Rehabilitation Medicine (BSPRM). They received a grant from NHS England to start things off - from their October 2024 newsletter:
Launch of BSPRM Clinical Post Covid Society (CPCS): We created history once again by receiving a grant from NHS England to start a new sub-society for post-viral conditions, launched at the annual NHSE conference on Long Covid. The running of the sub-society will be funded by NHSE for one year and we hope it will become self-sustained from next year (2025 onwards). The subsociety now has >500 members, its own website, courses, and conference, and continues to grow with membership predominantly from allied health professionals. The subsociety is open to international membership, many of whom will be joining us at the CPCS annual conference in March 2025 in Birmingham.
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Looking at a letter the "The Clinical Leadership Group of the Clinical Post COVID Society" sent a couple of months ago I recognise three of the names: Segal, who was involved in (ran?) the UCL Paediatric ME/CFS clinic; Sivan, whom MEA funded "to develop and test a new protocol for managing Dysautonomia. . . in people with ME/CFS and Long Covid", and Bond-Kendall, who was the physiotherapist from Crawley's clinic who ended up on the NICE ME/CFS committee:

https://www.clinicalpcs.org.uk/wp-c...CS-Position-Letter-on-Long-COVID-services.pdf
 
Nightsong said:
Looking at a letter the "The Clinical Leadership Group of the Clinical Post COVID Society" sent a couple of months ago I recognise three of the names: Segal, who was involved in (ran?) the UCL Paediatric ME/CFS clinic; Sivan, whom MEA funded "to develop and test a new protocol for managing Dysautonomia. . . in people with ME/CFS and Long Covid", and Bond-Kendall, who was the physiotherapist from Crawley's clinic who ended up on the NICE ME/CFS committee:

https://www.clinicalpcs.org.uk/wp-c...CS-Position-Letter-on-Long-COVID-services.pdf
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Good points @Nightsong - there are definite cross overs with some of the dodgy MECFS researchers of the past. Segal is involved in the Long Covid CLoCK study and has history trying to blame mothers perfectionism in ME in children. I think Sivan supervised a Masters study in 2021 looking at physical activity in Long Covid and is very much a rehabilitationist.

Also had a look at the SOS Bill of Rights while looking on their website:
The right to be:
Believed
to a Diagnosis
to Support
safe healthcare
Funded research (funding for ALL types of research)

All very noble and does sound good but it's also way too vague as you could say that these are present in the present Long Covid system, which is rubbish. Even if a clinician subscribes to a rehabilitation and/or a psychological model they would say the patient is believed, can give a diagnosis, give (crap BPS) support and the funding of ALL types of research is just bizarre - even crap exercise research?!

I'm just not sure they have the nuance of understanding needed to really move things on for people with Long Covid and definitely not for people with ME who they seem adverse to.

https://www.longcovidsos.org/bill-of-rights
 
InitialConditions said:
The GP leaflet links to a 'PESE booklet', which is available here: https://www.shu.ac.uk/advanced-well...manage-chronic-fatigue-brought-on-by-covid-19.

It's just a booklet on general chronic fatigue, and doesn't even mention ME or CFS once. It's the standard crap you'd get from an NHS CFS clinic. Nothing to do with PESE/PEM whatsoever.
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One of those resources which seems as if whoever wrote it didn't bother to read what they were writing. Don't focus too much on your symptoms - but also you should complete daily and weekly planners minutely analysing your activities, symptoms, "feelings, behaviours and beliefs". Be optimistic about "recovery", but also, "For a minority of people, recovery will mean learning to manage their fatigue long-term." :banghead:
 
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