ME/CFS services in the United Kingdom

JellyBabyKid said:
they think it is those other therapists who are doing it wrong never them, as they "don't do GET" and somehow failing to see that adaptive pacing upwards is the same thing.
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They are not failing to see it, they are refusing to see it.

There is no excuse left whatsoever for these clowns. The evidence is overwhelming. They are completely wrong, and have been since day one. The fundamental problems with their 'science' and the claims based on it, and the harms resulting from it, have been comprehensively exposed, and they still cannot admit it and change paths.

The real question now is how are they able to keep getting away with it? Why are they and their claims so protected? What is it that these people are offering that is so special and important that it cannot be allowed to fail, no matter how obvious and costly and cruel that failure and the denial and coverup are?
 
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Sean said:
They are not failing to see it, they are refusing to see it.

There is no excuse left whatsoever for these clowns. The evidence is overwhelming. They are completely wrong, and have been since day one. The fundamental problems with their 'science' and the claims based on it, and the harms resulting from it, have been comprehensively exposed, and they still cannot admit it and change paths.

The real question now is how are they able to keep getting away with it? Why are they and their claims so protected? What is it about what these people are offering that is so special and important that it cannot be allowed to fail, no matter how obvious and costly and cruel that failure and the denial and coverup are?
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Data.

I had a hopeless interaction with the hospital this week (assisted by my advocate) as to why certain things can’t be considered - doesn’t gather data, can’t send us info on usage or effectiveness so who cares if it’s effective, it cant justify itself to the NHS so it’s not used. So stark.

Although my first thought was, no my first thought was F.F.S. and a close second was “Sarah Tyson really missed the mark then” and my third was “urgh the NHS is obsessed with measuring and justifying stuff”.
 
Sean said:
The real question now is how are they able to keep getting away with it? Why are they and their claims so protected?
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Yes. Exactly.

It's not cost effective, in fact it is the opposite, because patients are not getting better, which means we need more healthcare for longer, because we remain chronically unwell and need more access to mental health support to try and live with the unacceptable, and social care support because we just cannot physically manage and benefits because we're too unwell to work.

It is arguably the worst of all worlds.

Either it's now at the point where it's too big to be unpicked back out of the NHS, or it's about ego and accountability. Who might be held responsible and at what cost if fault and failings are actually admitted?

And the cost of reparation and putting in something meaningful in its place.

Or just inertia; something needed to be done, this is something, it'll do
 
I’d like to think we can make that argument about it being not effective and not cost effective to those in charge of commissioning.

One problem is, when there are so many calling for support, there is pressure to deliver support, so if they can spend a relatively small amount of money to tick that box, someone will. Which is part of why we end up with what we do. And I agree with others that we should be careful and clear in what we ask for (we being those representing us). We can see the new Long Covid charities and some like the MEA doing this and those running current clinics who want to build empires lapping it up.

The focus on the most severely affected could be the best place to start. It seems harder to turn into rehabilitation theatre. It’s a bit rubbish for those who are mild/moderate but hopefully we can build from there.
 
hotblack said:
As a bit of an aside there’s an interesting book called The Unaccountability Machine which talks about “accountability sinks” where in big complex organisations nobody has responsibility for decisions making it difficult to fix things. I think it’s a problem we see in various bits of the NHS but has particular relevance to how people with ME/CFS are handled. Nobody is responsible for us, everyone gets to say it’s somebody else’s fault when things go wrong, so nothing improves.
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Given Hotblack's user name, obligatory Hitchhiker's Guide to the Galaxy reference (previously mentioned on the forum here) —

An S.E.P. can run almost indefinitely on a torch or a 9 volt battery, and is able to do so because it utilises a person's natural tendency to ignore things they don't easily accept, like, for example, aliens at a cricket match. Any object around which an S.E.P. is applied will cease to be noticed, because any problems one may have understanding it (and therefore accepting its existence) become Somebody Else's Problem. An object becomes not so much invisible as unnoticed.

A perfect example of this would be a ship covered in an SEP field at a cricket match. A starship taking the appearance of a large pink elephant is ideal because you can see it, yet it is so inconceivable, your mind can't accept it. Therefore it can't exist, thus ignoring it comes naturally.

(Quoted or summarised here)
 
SNT Gatchaman said:
Given Hotblack's user name, obligatory Hitchhiker's Guide to the Galaxy reference (previously mentioned on the forum here) —

An S.E.P. can run almost indefinitely on a torch or a 9 volt battery, and is able to do so because it utilises a person's natural tendency to ignore things they don't easily accept, like, for example, aliens at a cricket match. Any object around which an S.E.P. is applied will cease to be noticed, because any problems one may have understanding it (and therefore accepting its existence) become Somebody Else's Problem. An object becomes not so much invisible as unnoticed.

A perfect example of this would be a ship covered in an SEP field at a cricket match. A starship taking the appearance of a large pink elephant is ideal because you can see it, yet it is so inconceivable, your mind can't accept it. Therefore it can't exist, thus ignoring it comes naturally.

(Quoted or summarised here)
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Thanks Hotback! Ordered book!
My life atm outside health ....
Just like Planning, Enforcement and their stakeholders like Environment Agency *its Dirty Water recently.
 
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