Statistics on ME by governments

Keeping statistics on disease is important for various reasons:

• It gives an indication on how large the problem is
• funding is often determined on number of patients
• It also informs governments on the effectiveness of treatments
• To know the prevalence and impact of a disease

Feel free to add any other reasons for keeping statistics

In this thread I would like to discover

1. Which governments do/ do not keep statistics
2. For governments who do, what information do they gather
3. If there are governments who do keep them, can they serve as a model for other countries
4. If 2 and 3 do not apply are there any diseases where statistics are kept by governments, who could serve as a model for statistics for ME (for governments)

 

Summary of countries who do not keep official statistics

• The Netherlands

 

Switzerland doesn't keep statistics. in fact as far as I'm aware ME has no official recognition as an illness or disease.

99% sure France doesn't either. but perhaps wait for someone else to confirm this because I may have missed it if they did.

 

I don't think the British government does, but I wouldn't really expect them to; it would make much more sense for the NHS to do it. Where NHS stats are recorded, I'm not clear on the exact mechanisms. I assume it's mainly via disease codes assigned by family doctors and hospital clinics, but large scale clinical trials may also contribute. There'll be some information in the accounting systems, but that will partly reflect current government priorities. It's also a record of what's been delivered, not what's actually needed.

One government department here has an indirect method of collecting data, via people who claim sickness or disability benefits. Claimants give their diagnoses in their applications, but not every affected person claims benefits and the diagnoses they give aren't always checked in detail against their medical history. It's a rough picture that's used mainly for economic and planning purposes, and it's likely only the broad trends and detailed but incomplete snapshots are archived.

Unless a government has made a deliberate decision to record this data (which isn't cheap or easy), the picture's probably always going to be fragmentary [ETA: and skewed by the motivation for collecting it]. Even in countries where private insurance companies receive minutely detailed billing information, the resulting records aren't centralised and the system automatically excludes everyone who can't afford insurance.

 

Norway keeps stats on the use of ICD G93.3, but that also includes PVFS. It’s further complicated by the fact that GPs do not use the ICD 10, so G93.3 only includes patients that were diagnosed by specialists.

The BPS lobby is currently trying to create a register for «chronic fatigue» where they don’t even want to differentiate between ME/CFS and CF.

My non-legal opinion is that they have already broken several laws because they tried to do it without making the process public and involving patients. It also seems like they have gone rogue within the governmental structure that the register exists within. If anyone there had any sense of integrity, the behaviour of the BPS individuals would be grounds for termination of their employment.

 

No statistics in Hungary either.

Hungary uses ICD codes for official diagnoses but even checking the data for medical records wouldn't work well as doctors don't even know the code for ME/CFS or that it even has a code. I think very few people walk around here with an actual diagnosis.

 

It'd be a good way to do it, but the privacy issues would be a big hurdle. Assuming people were given a choice, many wouldn't consent.

 

hopefully it would only be done with a locally run open source LLM. Like Llama or Mistral. because no one new is reading your data in that case.

(not the kind where you send your data to servers over the internet like chatgpt or claude, in that case definitely a privacy risk)

 

Yes, but what I struggle with is that there's still a loss of control. Processed data is always processed in order to use it for something, and often it's not what was originally declared. Nor are the products of the data kept "in-house".

But I haven't come to any firm conclusions about how much it matters. The answer feels too slippery to get hold of at the moment.

 

I agree. From what I was trying to say the difference would be that a locally run open source LLM is being directly processed on the machine, so no internet is required. Everything stays on the computer.

While the server based ones send the data to server farms often in other countries and the data is analysed by an AI from there. And honestly it’s hard to trust when they say they don’t use the data because they literally store it in the data farms. So I’d definitely stay away from the second option.

Of course, the first option still requires you to trust the researchers handling the data, but atleast the researchers are the only ones with access to it, as opposed to the “chatgpt” option which would mean your medical data is literally stored in server farms owned by private companies.

 

Yes, companies routinely use LLMs and other AI/ML and data privacy is maintained. It’s not a technical problem but a policy and public perception one.

I don’t think it need be a privacy issue but because of the lack of trust there would be a privacy issue, if that makes sense?

Getting reliable coding for all patients in the UK via the NHS would be great, but I suspect it’s going to take a lot of agreement on terminology and what ME/CFS is then work over many years for GPs to update peoples records. Some useful links
https://www.england.nhs.uk/long-read/clinical-coding-snomed-ct/
https://digital.nhs.uk/services/terminology-server#content-included-in-the-terminology-server

 

I understand, but we're talking about governments. Who will farm it out to private contractors, because it's not what governments do.

Who may keep the data secure, at least until they're hacked, but will want to monetise the products of that data—in fact it'll be part of the deal, so the governments can pay as little as possible.

And if new opportunities for profit arise, the contractors will stretch the boundaries of the original permissions till you can see daylight through them, because they know there's bugger all the governments can do about it anyway once they've handed over the goods.

That's my problem.

 

I wonder if there’s possibility of using something along the lines of https://www.opensafely.org/ ? Although you wouldn’t be able to make changes to update records there may be a way to analyse the data to get a better idea of numbers

 

I've actually chatted with a researcher who specializes in using electronic health record data for questions like this. There are lots of hospital consortiums with clearing houses that thoroughly anonymize data and have restrictions on how that data can be accessed. Obviously people can still be skeptical of whether those practices are good enough, but it is done frequently for other diseases.

When I spoke to her about the possibility of doing this for ME/CFS, the biggest issue is how ME/CFS would actually be captured in the data. ICD codes might be useful but only if applied correctly--I know many people who meet CCC criteria but only have "chronic fatigue, unspecified" on their charts.

You also don't exactly know what criteria any given physician is using even if they apply the ME/CFS diagnostic code, nor do healthcare interactions tend to capture relevant information in ME/CFS. You're most likely to end up with a sentence in a patient's (anonymized) chart that says "patient complains of persistent fatigue and difficulty continuing full-time work."

So you could try to do a search for words that relate to fatigue and screen out anyone who also has clear indicators of depression, anemia, etc. But you're still probably including a lot of people without ME/CFS.

You could limit your search to people who's charts describe something close to PEM, but that might exclude many more pwME if their doctors simply didn't think it was important to describe in detail.

An LLM (or any model, for that matter) will only be as useful as the reliability of its input. For a disease where there's a clear diagnostic marker that all practioners are looking at for diagnosis, it might provide useful insights. For ME/CFS, it's a total crapshoot.

I basically nixed the idea of doing an EHR project on ME/CFS because it was so unfeasible.

 

There is definitely a problem which is historical but certainly not ‘only in the past’ as it hasn’t been fixed yet where a patients records say more about who they’ve been unfortunately enough to have as their GP, GP surgery and any other touchpoints that allow the labelling pit (hard to get out of) to be used.

I think it’s Wessely but also some other bps who have tried on claiming there is a comorbidity with mental health issues, yet they know full well how the system in the UK was set up to, even without the patients knowledge, whack such labels on as if they do no harm but tick the box on the GPs QOF (they get paid for meeting targets on certain conditions and depression for very many years that target was ‘give 90% of those who might have it a card for iapt’ which makes for a pretty easy box to tick ‘say we have em a card’ vs others where you might eg have to actually get a patient to do a test or review)

that’s before you add in the push that if someone complains of tired or can’t get up or can’t think they’ve actually been taught as GPs that ‘cognitive’ IS actually ‘mental health’ and that ‘mental health is mental health so what does it matter if it’s ME/CFS or depression - once we’ve sent em to that dept they’ll sort it out (they don’t sadly - in fact they don’t hire people who can change those diagnoses mostly that someone will then see)’

then they don’t allow notes to be changed even if they were errors. Of course they influence future notes, as examples these days by enough literature showing the medical profession encouraging that if someone has a ‘whiff of the functional about them’ then probably anything they complain of is ‘caused by the mind’

so it makes me laugh that anyone thinks nhs data is anything to do with science or pathology or the patient symptoms honestly being recorded rather than a rather manipulative system in action - so using said data tells whoever more about ‘how certain groups and individuals are labelled and treated (in the laypersons sense rather than just medical) by a system full of judges, incentives and with biases and discriminations pushed as a culture’ than what any, including those individuals actually have or had.

it’s always seemed a tail wags dog system. Unless you came across a miracle GP then the CCG created a supply-led system with closed lists for things like endocrinology and pushes to fill targets for IAPTS and people writing papers that used the sales techniques we see in the FND papers suggesting ‘1 in 10 probably is the number you’ll be labelling if you are doing it right and ps they tend to be females you can assume/make up a false narrative of trauma to tick the box on the why’

And of course that action of gerrymandering the demand to ‘meet supply’ then creates worse circle because CCGs plan how much funding each dept actually got based on demand that has now been fudged (so those who might have been endocrinology patients got listed as iapt ‘because that’s all we can offer you’) so becomes even more off. I don’t know if it goes as far as training so there are enough biomed physicians trained vs iapt therapists etc over those years etc too


The only accurate way of estimating data I can see is seeking out the few places where things are as they should be. Where people access those who open-mindedly refer based on symptoms to somewhere that is diagnosing only to get the treatment path right (not meet targets by having a bigger ‘fatigue’ or ‘pps’ clinic) . And if that exists then extrapolating it.

After it has been cleaned up - so those who got labelled assuming it was depression for several years first but in retrospect now they know what both were realise they never had depression it was just the word they knew more if its existence etc.


It puzzles me somewhat when the attitude seems to be that patients testimony will be wrong if people could correct their records. It’s not like still today having me/cfs is anything other than a dystopian millstone vs those other labels so if it weren’t for the treatment being harmful and not fitting who would choose it.

vs all the nudges and initiatives and ‘heuristics’ (like who gets diagnosed either fibro vs cfs in past was based more on the person doing the diagnosing and who they were/their thoughts in each label, or ideas like ‘if you get pain it’s fibro’, more fatigue it’s cfs’) that weren’t accurate and targets etc that influence the staff end of things.

also a lot of things that lead to and are pertinent for me/cfs I’m not sure are categorised vs things that mightnt be eg is tonsilitis recorded on history even if it was really bad and really regular issues? Is overwork reinterpreted as a term that infers ‘perception of’ or ‘anxious’ when we know someone plugging through crazy hours when they are already ill with something is a big factor (but notes rewrite it to looking like something else entirely so if someone reads it they wouldn’t imagine a person did 16hr days and was mentally fine but can’t recover from that EBV or flu or whatever)

 

UK technically has SNOMED via GP level (which was never joined up records-wise until recently we’ve suddenly got apps etc where it seems more like that since Covid).

but there are many categories , or none, someone could have been plonked under

- even if the diagnosis came from a consultant then today would it still end up with them sending a letter to GP and it being down to GP surgery to choose to put that on as a drop-down or whatever SNoMED involves and they can choose any of the ME (I think there is one code) or CFS (I think there are multiple codes some relating to severity and some being more ‘functional’ inferring) or another more functional code they might claim ‘is the same thing’ or if anyone is actually checking that is correct.

Then of course as clinics aren’t long term responsibility for me/cfs patients and therapists offering diagnoses and short courses then as mild people get made worse who is logging that?

And the message of ‘no treatment for you’ was made so clear to so many patients they would avoid GP more than those who aren’t ill and people were taught to assume the me/cfs magically went away after 3yrs.

mine is all hidden in letters that couldn’t be destroyed (but maybe could get lost over the years) that may or may not have been uploaded. And if there is no link to them and no coding of drop down that puts it in someone’s history no one is going to go looking.

and putting it in your history /record I don’t know does that means it’s one for everything ? In which case you have to be very cautious of having it on there for employers or if influencing hospital treatment for other things. So many of us have to avoid it being on there.