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

So we could find out “how many people have ME” of sorts.
The NHS has a number of “fatigue clinics” which “diagnose ME” all someone needs to do is a Freedom of Information request as to how many patients were diagnosed since 2019 in each clinic.

No, it’s not going to give a true picture as these are new diagnoses but given the low rate of remission it would be a starting point that each trust has at least X number of ME patients

 

Action for ME did this a few years ago, with mixed success.
https://www.actionforme.org.uk/research-and-campaigns/campaigning-for-change/foi-report/

also see https://www.s4me.info/threads/me-assoc-how-many-people-in-the-uk-have-me-cfs.38501/

 

It could be done again, or this information used as a starting point.
If there are over 100 NHS trusts they could be mapped. Those trusts sit under an ICB?
Then you tell the ICB how many people are recorded as having ME in their area. Maybe add to it pwME who wouldn’t necessarily be in those figures but do live in the area ie severe and very severe (via support groups/social media you identify these patients)
Then you ask what services for severe/very severe as statistically % of the mild/moderate will deteriorate (plus x pwME claim to live in area and have severe/very severe)

Would an ICB say “nope” to commissioning a service if that was the situation?

42 ICBs in England apparently.

 

I think it should be done again, and the right questions asked in the right way. Over the last few years some ICBs have started linking up GP datasets, so some ICBs will now have data on people diagnosed with ME and CFS including people who have not been seen at a trust in the last X years (the study mentioned in the thread identified people through hospital records only, people had to have visited a hospital in the last X years). It won’t be all ICBs but could allow inferences to be made, it also won’t pick up people not coded at all.

 

But it could be a starting point to argue that ICB’s need to commission services? Essentially we need some sort of headcount of pwME in the ICB area rather than in all of UK or England
(14 Health board in Scotland and 7 in Wales, not sure NI)

 

The AFME FOI project? They asked “How many patients with a diagnosis of ME/CFS are receiving care from [NHS TrustT NAME/ICS NAME] as of the date of this FOI request? ” so it’s a circular conversation - all patients included in the number are already receiving care..

 

Do people think it would be useful to focus advocacy efforts on specialist provision for people with severe and very severe ME to begin with?

In their case, there's no argument about a lack of effective support and treatment, and no one could argue 'therapist'-led rehab clinics are suitable for people who're so unwell they're not ambulant and in some cases can't eat. They need care from doctors, and a centre set up to provide care and develop protocols that could be rolled out more widely would gain significant understanding of ME/CFS.

If a specialist centre like that were established, it'd have a chance of gaining respect from other doctors. It seems that's required before anything else can follow.

 

Good point!

 

Yes @Kitty.

 

This is the sort of campaign I’d like to see #thereforME lead

 

Nicely put.
I was beginning to think that too.
It is now on my list for discussing with Sonya.

What would be useful to know is why and in what terms Hemsley's proposal was turned down.

 

"The lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall. This improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS."

Unequal access to diagnosis of myalgic encephalomyelitis in England, 2024, Ponting and Samms

 

But we need to know by ICB area for the strategy I outlined, to work.

 

"Hospital Episode Statistics data is routinely collected by the NHS in England together with patient age, gender and ethnicity. This data, downloaded from the Feasibility Self-Service of NHS DigiTrials, was used to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3; 'Postviral fatigue syndrome') according to their age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB)."

 

Dos that work, though, if it is lifetime prevalence? If some of those are going to get ME/cfs in fifteen years time, or had it as a teenager and recovered, they are not going to be needing a service today. Does the 390,000 figure represent anything real at a point in time?

 

So the data we need exists? For England?

 

Yes, it only captures people who have been through a hospital since X date (can’t remember - early 2000’s possibly)

 

That far back? I think it needs to be no more than 2019/ last 5 years

 

I agree but with a however - which then starts to make me think something more nuanced is needed here. Specialist provision is an ambiguous term.

I definitely agree in as far as the starting point needs to be that care offered needs to begin with the illest, as it would for any other medical condition, and that works and measures proper outcomes long-term like you'd get for cancer or heart wards. And not, as we've historically had dumped on us, the starting point being the mildest (to the point they might just have fatigue and we've clinics for 'MUS' or whatever delusion that weirdo part of healthcare is imagining).

I do think that siloing the most severe into one hospice and calling the job done isn't the answer, and is dangerous. So really I'm not sure it is just one, and it absolutely has to be biomedical doctors and scientists and big enough that research and learning is taking place (which is where I think limiting 'intake' to very severe/severe is a question). And given even clout as a 'institution' to have a chance it will be able to change the rest of what is done over time (and a heck of a plan there in the mean-time to call that resource-leech out).


I don't think that separating the spectrum has done us any favours/ it's been part of how we have been screwed from moving forward. I think it could/would be a mistake because size is going to matter, as well as the logic of the condition [it gets worse with exertion etc long-term and isn't just 'people with a bit of post-exertion fatigue' complaint] being studied, in the unavoidable issue of going up against this 'functional industry' to really get anything that sticks with anything there is a critical mass I suspect.

I absolutely think the aim needs to be proper clinics led by biomedical doctors and biomedical science, with support from nurse and a team who know what they are doing on implementing practical care and adjustments. They need a fighting chance to be respected and still exist as intended years down the line.



I also think that even if that was done the next step would still have to be changing the hospitals to be safe somehow (blows my mind the more I open my eyes to it and realise what a massive delusion issue there is with this HUGE 'functional' emperors new clothes resource such that 'helps' noone but has a huge mouth and amount of funding).

It isn't just 'for ME/CFS specialist care' that the treatment door is closed. It is a barring of people who have the condition from any healthcare.

Which when combined with serious illnesses goes as far as behaviour so deluded it leads to watching people die. For care that isn't specific to ME/CFS, certainly not re: equipment or skillset to eg do feeding tubes.

All for the belief mis-sold deeply by a few, that those of certain demographics have to be weeded out as 'functional'. Pushed by papers like this (and the ones above it): https://www.s4me.info/threads/financial-outcome-measure.39312/page-3#post-548092


And having funneled the illest off under someone in the back of beyond doesn't help the delusion that 'it's something to do with us being weird' instead of brainwashing into NHS staff some very weird thinking invented by others.


But the only other way I can see to guarantee to keep the very severe safe right now would be super-protections where the hospital has someone there ensuring they are kept safe from all these issues and not being treated for reasons of bigotry. Who has a very big stick to enforce that vs the pressure from colleges on doctors to kiss the ring on believing in unicorns. Maybe the middle-ground is decent centres in some big hospitals?

But both aren't going to work for very long unless the planning includes a way to go up against that massive money-spinner (for those selling 'functional') who are determined to keep pretending 'it doesn't exist' in different veiled terms (a la the 'CFS is a delusion on has an illness called ME' propaganda-mill has gone into overdrive I think) needs much bigger than a few siloed genuine staff. And a way forward that will change the main healthcare to remove those tentacles of the functional industry picking off patients. Otherwise even if in the right hands to start with these centres will change hands.


So at the same time I think all those 'fatigue' and functional type centres and the BACME type staff need to be firmly removed, after staff have been deprogrammed and offered mental health support for that transition (otherwise they will just hit other wards with it). And there does still also need to be a massive removal of all of these functional initiatives that are embedded into processes spilling misinformation causing confusion. And hospitals and infrastructure will need ways to deal with professionals who have these 'belief' issues etc still.