NHS bosses reject calls for specialist ME care, 2024, The Times (London)

I agree that I think we need to try and get the experts thinking on this one.

Particularly if anything being gotten hold of is only measuring those who are 'accessing care' for a condition where coercion has been used to prevent/discourage people from doing so. But also what other illness doesn't have proper clinics that monitor long-term and has actual treatment that doesn't harm? SO using what would be sent for those illnesses that do isn't equivalent for one that has a 6week course and bye bye.

It is a very important issue. It relates to the funding so is everything really and I think has been played over the years. How you get back control so that people are slotted into the correct categories when those in charge of doing any diagnoses are having different options sold to them and so on is a hard question.

FND has been a way of diverting funds as is trapping people under mental health diagnoses and so on.

And we have a chicken and egg situation where many people know that a CFS diagnosis on your records only gives you a black mark regarding access to any investigations or treatment for anything else still. And those who might have ME/CFS will be in a position where they are also reading the misinformation and thinking, as I did, the description of the condition sounds like nothing they have. But some tired people might think it fits if they read the NHS website.

Until there are some decent clinics that offer something who knows what is being measured by them and dumped into it. Whether someone gets sent to one place or another seems to be based more on money and politics than symptoms?

And so, is there actually a way of side-stepping this and some expert helping to say on this occasion this way is how we are going to establish the numbers.

And at least if we had estimates for how prevalence might look then we could nationally compare to regions that might indeed be miscategorising and get some insight from the numbers 'moving' from eg the ME/CFS pot to the FND pot and so on.

 

This ties in with something I’ve been trying to put my finger on.
I feel like Maeve’s inquest has generated a lot of decent reporting about ME, but there is a disconnect when Sarah Boothby or Sean O’Neill or others are speaking to the press. They will assert that pwME face disbelief, that it’s psychological and “the other side” have stated that they do believe in it and it’s a real disease. And Sarah in particular has said about how long it takes “the penny to drop” that “this” is ME (referring to how Maeve didn’t respond well to treatment and declined).

PwME require a type of medical care which is as alien to modern medical staff as a literal alien from Mars. Medical staff see us as humans but we’re more like lizards in human suits ok I don’t know where I’m going with this analogy…

Medical staff don’t understand what ME does to a patient, and they don’t know how to treat a patient with ME in any situation. They don’t recognise obvious signs and instead try to attribute them to something else (usually psychological) this is what needs to be highlighted.
The disconnect is “us” saying they don’t believe it’s real and “them” saying well we believe it’s real - but when they see a patient with ME they don’t think ME is the real problem.

Medical staff may believe in a concept of ME but when faced with a pwME they can’t/don't/won’t

 

And if noone is doing a rotation that involves ME/CFS patients (and that needs to include mainly those severe, very severe and definitely not just the mild) being properly understood and studied and 'treated' there never will.

So not only is there no teaching on it, there is no colleague (eg in big GP practice someone might rotate through) who did a rotation once - so that person can be called the first time someone sees a pwme for the first time.

Even in ENT stuff I remember the difference between the person who'd done an ENT rotation and those who hadn't at the GP.

I think on some of the main issues however decent guidance should help, but there is a major issue with what is effectively briefing to the contrary

I also think that even those who believe they might 'get' ME/CFS haven't had the point about how we genuinely do get significantly worse pretty quickly when placed continually in a bad situation. I think that is poorly covered by everything.

So people think 'yes exertion causes x time of worse symptoms' and not 'and if you keep doing that [eg playing loud music and talking at them] then you are re-exerting them, and it becomes exponential, so within a few weeks their disability that has directly caused is perhaps unrecoverable and much more extreme than could be imagined'.

Because we ourselves have to described it as taking weeks to recover from attending an appointment we might have carefully planned to limit impact from. You never get descriptions stating that someone severe or very severe being put in an environment of x, y, z - which I guess is how many illnesses are observed - will become like this within a week. And of course you sort of need to describe what is going on internally because there isn't that much to see, like a rash, on the outside.


I do think that we need to be wary of complicated words to cover up what is this 'functional' selling they don't realise is selling that they don't believe us btw. They've just been brainwashed into thinking it isn't what that is too.

But there's no real hunger chasing us for info or action from these claims and they are happy to follow these protocols without asking themselves have they ever even seen any of these fictional frequent attenders (who aren't the actual demographics that are the frequent attenders but the crowbarred in MUS as a switch and bait) that are apparently so constant they are collapsing the NHS, or are the papers they read tosh.

So they are creeping around on the look out for these ghosts they've been warned of to fish out and wonder why the neglect they've taught is treatment doesn't work.


Not our fault they are confused /conned into thinking there is a debate that doesn't exist.

And we don't have to accept being told we are that weird, when 'unexpected' only really accommodates the situation

Maybe the first time it is somewhat understandable those being conned are left confused, utterly unforgivable those selling the pretence there is 'this other side' are confusing them. And then both of them are pretending it's our fault 'for being confusing'. It's another con to be too nice about all of this and I get outraged at the repeat offenders helping themselves to forgiveness in an entitled manner. And us being obliged to politely say 'well of course, you didn't know'.

 

I think that's a very good idea. It stops the watering down process of the multidisciplinary approach of those who can leave the house. It might, might escape BACME as this isn't in there provision or expertise.

It's clear there is no community care at home or protocol for nutritional or orthostatic needs, which is the sticking point of why it's so dangerous. Protocols for the severe if hospital admission is needed can then be clear.

Bottom up, all in approaches are just fraught with difficulty. But this could set precedent and automatically conveys how serious a disease it is.

Yes to what Jonathan said about this and ThereForME. If they'd focused on the severe/very severe instead of general aims it might well have been easier to action and to evoke a response, emotionally and practically.

 

That was the thinking behind the suggestion.

First, people with severe and very severe illness need care. In hospital, of course, but also domiciliary care such as regular monitoring in people who are stable, and working to prevent hospital admission in those with signs of deterioration.

Second, much of what's learned about looking after them can inform the care of everyone with ME/CFS. Also, doctors would quickly learn that most of the severely ill people they see weren't in that category to begin with. Their illness progressed, which means that progression may be a risk in some people who are currently less ill. Which (join the dots) means people with moderate/mild illness may need preventative care and advice, and (more dots) how do we do that? Start by taking the risk seriously?

Things never work out that neatly, but if a small number of clinicians got involved with seeing and treating severely ill people over a period of time, at least some of them are likely to end up getting it.

That might, possibly, start a ball rolling.

 

Very simple and to the point.

The 'rejection' being discussed may in reality refer to a narrower rejection of some so far unknown protocols for very severe cases but as a response to the framing by the Times it is timely and appropriate.

It is a pity that bureaucracy at NICE is so strangling that there is probably no chance of re-opening the Guideline process in the near future. To obey NICE rules it would probably cost half a million and last three years.

 

Would it be possible to get a presentation of some kind at a rheumatology conference?

Brian Hughes is excellent on PACE and philosophy!
Caroline Kingdom on visiting severe me patients

 

Are there any areas or even sub areas in the country where the offering is anywhere near good enough that it could be made into a clinic that does cover all the spectrum just with follow ups and no silly courses or connections that would put people off?

Might be worth a private thread if this isn’t ?