#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Oh I don’t know have I conflated it? He should.

 

I would estimate that this would be a very minority view in the wider ME/CFS affected population

 

That is perhaps the problem. Everyone assumes that a government plan will exorcise the gaslighting ghosts but they might well end up buying a new bigger gaslamp.

 

A lot of us are honestly extremely desperate. Living in inhumane conditions.

Whether or not it is true, I think it is natural for those of us in that position to assume that things can’t get much worse. When you see the status quo as, frankly, terrible, change starts to be seen as good, almost no matter what.

Of course, that isn’t how reality works, see recent events in the US etc.
But it’s definitely how it feels like it works, to a lot of us.

 

buying a new bigger gaslamp.[/QUOTE]
I disagree with framing a majority desire for substantial action for the government as “the” problem. For most, its a far more compelling answer than accepting or tweaking the status quo and waiting another decade

 

I think that the severe require A specified suite of therapists Accessible as required in some regions, *as well as physician-led services* to meet medical needs & get patients actually seen and cared about .which is actually the NHS standard for other comparable conditions. The question is, why hasn't there been campaigning for this? It has just been leave it us to negotiate behind-the-scenes and well , it hasn't really worked. so bravo for the unpaid carers at #thereforme for actually picking up the mantle but it's such a late stage it's going to be hard to get anything in the plan now & probably will be even harder after. especially as it would require extra resources because most services are just OT from what I can see.

 

But that is not what I am saying. I didn't put 'the' in scare quotes but I see it as a very real contribution to making the situation worse rather than better.

We all want substantial action but if the fishmonger is selling you rotten fish the solution is not to pay him more so that he can sell you more rotten fish. You need to persuade him that his fish is not good enough. We have a government that does not understand the problem and is advised by people selling a service that looks worse than useless.

Nobody is suggesting the alternative of accepting the status quo. We are trying to shout from the roof tops that the status quo of useless rehab centres in the community needs to be closed down, which might save enough money to provide a useful service. Nobody is suggesting waiting. But unless there is reason to think money will be spent on something that isn't worse than useless supporting a government 'plan' seems very risky.

The real problem is that we need a service run by physicians who understand ME/CFS. There used to be a few who did understand reasonably well but they have been pushed out. Now there is nobody and the message from the Royal Colleges is that the establishment doesn't understand and is not going to train up people who do. It is a very difficult situation but there is no point in fuelling the current disastrous situation. You need to smell the fish and check it is fresh before buying.

 

Why do we need a suite of therapists if therapists do not understand the illness?
Wouldn't it be better to have a single dedicated professional with deep knowledge of ME/CFS, maybe a nurse like Caroline Kingdon, who can easily cope with OT skills in terms of providing ADL support.

Why don't we have professionals like Special Needs teachers who have a huge range of skills because they have to deliver on a one to one basis long term?

 

It is true that NG206 essentially specifies certain therapist roles (s1.11.8 "Refer people ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they. . ."), but it's not at all clear to me that just because that's in the guideline that charities & other patient organisations should be asking for it. We should be asking only for what's in our interests.

The 2002 CMO report was, I understand, widely considered a favourable milestone. It also recommended the setting up of local services including CBT & GET; we got the CBT & GET, and not the medical care and the nursing & personal care it also specifies. But in recommending that this type of clinic was set up it contributed to the loss of interest by physicians, and the effective ceding of ME/CFS to psychologists and physiotherapists.

If the plan were very much a radical departure from current practice, RCPsych & many others would be howling, demanding that it be brought to an immediate end, in the same way that they did for NICE.

Also, with NG206 we had some idea of what would be in it: there was a draft version & comments made by organisations on the draft were published and responded to publicly; this process, by contrast, is almost completely opaque. There's no draft. The names of those involved are not made public. We have no way of knowing if it's brilliant, mediocre or dreadful.

 

no. I don’t think that meets the needs of the severely affected who may need an ongoing range of support eg joint care , emotional support / counselling. So along with an OT for equipment, this is a suite to access as required but used in a way completely differently to what nhs has been trying to do which is to ignore the severe, and offer the minimum to justprod the mild-moderate back to doing more. Therapists such as physios could be trained to understand how to work with very severe patients

 

The Nice guidelines are not based on the medical care model tho?, or physician-led services so the two things are contradictory? We have either got the medical care model with nurse & full therapist support, such as what MS and Parkinson's have, or you have the Nice guidelines which is to me a random choice of therapists with some random Dr input, to fill up the space from Graded exercise therapy

 

Is it fair to say that we want teams that know how to help with the things that people with ME/CFS need help with, instead of teams that want to use their specific tools to try and help?

 

Like Trish, I don't think we are really at odds over this. But I don't honestly see the need for more than one professional other than a physician. A nurse can counsel and advise on protection against flexion contractures. Nurses routinely take on all sorts of things like chemotherapy these days. There is no justification for having lots of therapists as far as I can see. You are guaranteed to get a situation with nobody taking responsibility and also dogma-driven treatment. The counselling will be based on bogus psychological theories. If there is nothing psychologically wrong with people with ME/CFS other than they are struggling to cope there is no need for a psychologist as far as I can see.

Surely, it would be much much better to have one professional who can deal with all these things? We do in other fields. We don't involve physiotherapists in management of rheumatoid arthritis any more. We don't need psychologists.

 

This is an evergreen, headline quote. It needs to have its own campaign, it needs to be hashtaggee, posters the lot.

 

That’s high praise!

Give us what we need, not what you want!

 

Pretty much. A good framing would be switching from a supply-side model to a demand-side approach. Right now they are supplying what they want to supply, irrelevant of need. Which is useless. Even to them. They don't know that, because they only consider their own perception of what they want.

But of course most of the garbage research loves to pretend otherwise, even on the clinical side it's all the buzz to pretend to be "patient-centered", but that's just meaningless feel-good marketing mumbo-jumbo. They never actually work with need. Only what they want to supply, based on what they perceive, and, mostly, on what they don't want to do. The complete lack of any market dynamics is probably the biggest obstacle to making progress, because the systems that do everything here also assess their own performance and their own satisfaction with their own performance. Completely incestuous.

Which, actually, is just about the set of things we need that are the most needed: what they don't want to do. We could pretty much do a complete reverse mirror of that, taking their private lists of "do not", and achieve 10x improvement. Which is just about the strongest indictment of mass incompetence imaginable. But they don't know any of this and can't see it anyway, because of all the mass incompetence.