UK: The Clinical Post COVID Society

I thought it had a poetic touch, even if it wasn't meant to!!

 

Sounds like the one discussed here: https://www.s4me.info/threads/a-new...al-conditions-2024-sivan-and-heightman.37234/

Now merged

 

Thanks, I had forgotten we had news of it in February.

But the email I received today at least gives me a justification for flagging it up at the Government ME research working party. It also gave me a clearer idea of who was involved.

 

It was meant to.
I just sometimes don’t consider my readers effort in switching from prose to poetry or from full explanation to picture painting. But thank you.

 

I don’t want to veer off topic, but I am thinking that there must be a huge panic occurring around such vast numbers of people needing treatment for all the Covid damage in the context of no meaningful efforts to reduce infections, quite the opposite in fact.

In the context of a lack of ability to manage even the pre Covid population health care requirements.

The chickens are coming home to roost over decades of poor planning and malicious cuts to provision and asset stripping. Those that created this situation are panicked and they’ve escalated the denial plan. So all of us who get sick now are gonna pay for their mistakes. As it always was only more so.


I don’t think we can address this one issue at a time, not without going under, we are swamped already. We do have to look at every new disaster of course regardless of the impossibility.

But I think we need some kind vehicle to push back on principle. To the whole lot and not have to wait for the latest bit of bad news.

This isn’t a meant as a call for any work from anyone, I’m just thinking we need an aggressive pro active strategy if we want to win the grand prize of being treated like full people not pieces of trash.

 

Random thought - "Dead Poet Society" came to mind - never watched it!

 

hmmm agreed. fingers crossed that one is heard by those to whom it was sent.

I saw 'Recognition' and thought 'of whom' (or what as an entity) when they put it as their primary 'emphasis' for the new professional society?

 

The real problems putting rehabilitation before research that shows it is any use.

 

This one made me laugh:

"Mrs Jayne Woodcock
Pyscologist
Biography to follow"

ETA: It was the spelling of her role that amused me.
Yes I know I'm just a big kid, but some days you just have to take the laughs where you can.

 

Bearing in mind that 'Long Covid' is a term being used to cover all and any sequelae of acute Covid, there are aspects of some types of LC where various types of rehab are useful - I'm thinking about respiratory issues, or certain post-hospitalisation problems - so it does make sense to have those specialists involved? As long as there's balance and this society isn't going to be dominated by people who think those kinds of rehab can cure the whole gamut of long-term problems.

 

The order of those priorities, if read with suitable cynism, says it all really as far as priorities and who they serve go.

Reads too much like the manifesto-type papers we see where deciding what you want to 'get', then 'offer' from a supply-led perspective, then 'research' being about 'something to justify what you've already decided to do' rather than 'what works'

Sadly such ambiguous terms, if noone requires them to explain what is meant, lend themselves nicely to people reading what they want. But I haven't seen anything that makes me think it isn't about recognition of themselves as a society instead of 'understanding' of the condition or those who are more 'expert' than them in it: those who experience it.

Which makes it a mission statement for a company more than a society looking to fill a need.

 

"we'll 'deal with them' for you" is pretty different to 'how can we develop expertise to better the lives of those unlucky enough to be hit by this', certainly in audience and therefore tone based on who said target audience is intended as

 

why the note about adding in those with ME/CFS then? seems like mission-creep if they wanted to claim that.

I don't know what others' initial musings are on whether it is safer to have a Chinese wall between those who deal with the respiratory-side and develop some new expertise in the ME/CFS 'type' side, with indeed sharing of expertise but clear responsibility to follow one or the other advice-wise where the area is applicable (so someone as a patient with both would get hopefully such rehab 'adapted by' expertise being input by those expert on the ME/CFS side)

Lowest common denominator has not tended to work well on these things, and to have already 'picked their partners' when eg @PhysiosforME has done more in their years of being up and running than BACME still can regarding patients and advice feels insightful.

 

@PhysiosforME

 

and you have people who are really interested in their area being landed with 'the other bit' and all the ring-fenced funding (if that ever happened) doesn't tend to fix that lack of interest (because different specialisms look and use different methods to look into things).

If you wanted to do it like that then you'd be relegating this bunch underneath a bigger entity that had been chosen based on being able to appropriately tackle the complete constituency.

I guess the closest analogy I could think of would be something like lupus (which can affect eg kidneys or eyes or lungs) being put under a rehab for one body-part instead of the systemic-appropriate department that could look at the underlying conditions.

And of course I don't believe for a moment that it isn't about a land-grab. We've all seen enough of people trying to cite numbers of people with x, y, or z to work out how bids work.

If it were about developing expertise and professional sharing of insight this would read very differently to how it does and the

'recognition, rehab, research' emphases would be in a pretty different order and certainly have caveats and explanations about what they refer to if not more sensible and precise terms. Because there would be empathy (as in the high-level skill that involves insight and intelligence on a condition and what it causes, not the pretend-meaning inferring that's 'sympathy' or 'being fake nice' some confuse that with) to realising this.

 

Recognition is going to be increasingly important, as fewer people even know when they've had Covid in the first place, and when they go to their GP with classic Long Covid symptoms they're ever more likely to be told it's 'just stress' or 'anxiety' and have they tried yoga?

The rehab I've had from an OT, physio and psychologist via an NHS Long Covid clinic has been about adapting to life with a chronic illness and addressing specific issues (e.g. the OT advised on mobility aids and home adaptations, the psychologist is helping me work out strategies for some of the social/communication difficulties that arise from cognitive impairment), not 'do these exercises and be cured!' or any psychobabbley stuff.

I'm absolutely not trying to say everything in the garden is rosy or that all therapists working on LC share this approach. Just that having OTs, psychologists etc involved, and the word 'rehab' being up front, doesn't *necessarily* mean BPS blight. Time will tell how this group develops and what influence it has.