If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

[Sasha]

Two parts to this question, really:

(1) If a cure, or just a better treatment is found for any disease, do GPs reach out to their patients to tell them and to invite them to get the treatment? Would this happen for MS, RA, etc.? Did it happen when the NHS wanted to switch people with asthma to inhalers with a lower carbon footprint, for example? (Not necessarily better for the patients but a situation where the NHS wanted to switch people with a particular disease to a new treatment.)

(2) If GPs would reach out, how would they identify us in their databases? According to Google AI: "In the UK's general practice, the primary code for ME/CFS is based on the SNOMED CT system, with "Chronic fatigue syndrome (disorder)" (SCTID: 52702003) being the underlying code. However, a more clinically appropriate preferred term is "ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome," which is being considered for use. The older ICD-10 code G93.3 for "Post-viral fatigue syndrome" is also frequently used in records, although it may not fully capture the diagnosis and newer ICD-11 codes are being developed." Is all that true? And if so, are those codes good enough to capture us all?

The NHS doesn't seem very proactive and I worry that they will assume that they will think that PwME would magically hear about any new effective treatment. Lots would, of course, via social media, the news, and via friends and family, but not all will.

So, would our GPS reach out to us?

 

[hotblack]

So, would our GPS reach out to us?

It would depend entirely upon the GP. Or local integrated care boards. What NICE advises, if people follow that advice and what services the boards think they need and if they commission them…
(Sorry I’m probably half answering your other post but they seem very linked in terms of NHS structures)

 

[Trish]

If it's massively cost effective to the government in enabling all pwME and pwLongCovid to return to work and get off benefits there might be some sort of edict to tell doctors to proactively contact pwME and prescribe the treatment. But they didn't do that when they claimed GET was the required treatment, they just denied benefits to many.

 

[hotblack]

there might be some sort of edict to tell doctors

I’m not sure the mechanisms exist to do that though. Or that medics would respond well to attempts to do such things. There may be advice from NHS England and if there is strong evidence this may be supported by guidance from NICE… But it relies upon different people in different places making decisions.

 

[Trish]

I’m not sure the mechanisms exist to do that though.

Neither am I sure about where an edict might come from. I'm thinking of rapid roll out of things like antibiotics for stomach ulcers, statins for high blood cholesterol, and the new obesity drugs that the NHS has given an edict for which patients are eligible.

 

[Kitty]

do GPs reach out to their patients to tell them and to invite them to get the treatment?

Very much doubt it. Apart from the NHS screening programmes and health checks for over-40s, I think it's a reactive service—you contact them when you need something.

 

[BrightCandle]

The diagnoses don't exist, the GPs don't know about the disease and there is no specialists to even drive such a push out. I doubt the NHS could push out a cure if it was found today to even a minority of patients even after it was approved which would be a monsterously hard thing to achieve in itself.

They have to reverse decades of bad training, rewrite all the training for medical students, make specialists and then wait for them to run departments and GP offices before it reaches patients. 20 years at best assuming it really invested immediately,

 

[hotblack]

I disagree. If there was a clear cut treatment the resistance to it wouldn’t stand a chance in the face of the evidence and the vast majority of healthcare practitioners would forget any misgivings they previously had.

Most people in the NHS don’t wilfully want people to be ill or to suffer. The problems have arisen because they don’t have clear tools or treatments.

 

[Sasha]

The diagnoses don't exist, the GPs don't know about the disease and there is no specialists to even drive such a push out.

The diagnosis does exist. Loads of us have got it. GPs know they have patients who have it and who they are (otherwise, who have they been sending to the ME/CFS clinics?). There aren't specialists to drive the roll-out - hence the question of what happens. I don't see a sane world in which the current absence of specialists prevents a roll-out - even in the NHS. But if we need specialists to speed that up, then the question is, what can we do now to get them in place?

I doubt the NHS could push out a cure if it was found today to even a minority of patients even after it was approved which would be a monsterously hard thing to achieve in itself.

Why not?

They have to reverse decades of bad training, rewrite all the training for medical students, make specialists and then wait for them to run departments and GP offices before it reaches patients. 20 years at best assuming it really invested immediately,

I understand the cloud of gloom that we have all had to live under but I really don't see that as realistic scenario. As soon as an RCT demonstrates an effective treatment - plus the fact that DecodeME has just shown that ME/CFS is genetic - I would expect it to take five minutes, not 20 years, to change the minds of most clinicians.

I think the question is, once those RCT results are out, what needs to happen in practice for roll-out.

 

[Kitty]

the vast majority of healthcare practitioners would forget any misgivings they previously had.

Most people in the NHS don’t wilfully want people to be ill or to suffer.

Yeah, I agree. I think it probably comes as a relief when they can do something to help. There are so many intractable problems (many of them mixed up with social factors) that leave them pretty powerless.

I remember the smiles of satisfaction from the consultant and nurse specialist when I reported that an arthritis drug they'd prescribed had made a big impact on my pain and fatigue. And when I went back the following year to say I felt much better because it had successfully kept the inflammation at bay. And when by year three, no more of my finger joints had fused and become useless. That's what they go to work for.

 

[BrightCandle]

The diagnosis does exist. Loads of us have got it. GPs know they have patients who have it and who they are (otherwise, who have they been sending to the ME/CFS clinics?).

People have them, but most don't. The digital records show less than 10% of patients have a diagnosis and they are handed out by a small select group of GPs who seemingly know about the disease. The few within GP offices elsewhere that have a diagnosis recorded likely got those privately from someone like William Weir or similar. Most patients have not been identified and we have no idea how many are aware they actually have ME/CFS and are clued in and following the news and would be aware a treatment existed. Those GPs equally aren't following along.

I think the advocates are in a different situation, we have awareness and we can push but if you just want to inform everyone with a diagnosis you hit a small minority of patients and no GP office in the country has records of their ME patients, most are still under a mental health diagnosis if anything at all. They can't identify the patients they don't have the training, and most patients can't identify themselves and most GPs don't accept self diagnosis either.

 

[Sasha]

People have them, but most don't. The digital records show less than 10% of patients have a diagnosis and they are handed out by a small select group of GPs who seemingly know about the disease.

Do you have a reference for that?

no GP office in the country has records of their ME patients, most are still under a mental health diagnosis if anything at all.

Do you have references for this, also?

 

[BrightCandle]

Do you have a reference for that?

Do you have references for this, also?

Chris Pointings research estimating 400k patients in the UK based on the best area of GPs for diagnosis. It shows a huge list of regions that basically have just a few patients. We talked about it loads on here. There is also the "Isle of Man" study which again S4ME discussed lots. I thought we all know this, that diagnosis is quite rare in the disease given how much its been discussed over the years. Kind of surprised this is the sticking point, this seems to me to be a pretty wildly known set of studies and why its been hard to estimate patient numbers.

 

[Eleanor]

Plus the new crop (numbers unknown) of people who meet the criteria for an ME/CFS diagnosis but have 'Long Covid' or 'FND' on their records instead.

 

[Sasha]

I remember the smiles of satisfaction from the consultant and nurse specialist when I reported that an arthritis drug they'd prescribed had made a big impact on my pain and fatigue.

Yes! Who doesn't want to see this?

 

[Sasha]

People have them, but most don't. The digital records show less than 10% of patients have a diagnosis and they are handed out by a small select group of GPs who seemingly know about the disease.

Chris Pointings research estimating 400k patients in the UK based on the best area of GPs for diagnosis. It shows a huge list of regions that basically have just a few patients.

The Samms and Ponting paper show a ten-fold range of diagnosis across different regions of the UK, so certainly there's a bunch of places under- or over-diagnosing, but they say:

Lastly, we considered 6,113 English GP practices with at least 2,500 registered patients which each, given the national prevalence of 0.16% (above), would be expected to have 4 or more ME/CFS patients registered. Two-thirds of these practices (4,061; 66%) had 8 or more registered patients with ME/CFS and 97% (5,937) reported at least one individual with ME/CFS. Of the remaining practices, 176 (3%) had no registered ME/CFS patients recorded in HES despite being operational and having a median of 4,765 registered patients (range 2,665–12,170), a total population of 917,570.​

I'm not seeing anything there suggesting that less than 10% of patients have a diagnosis and that it's only a select group of GPs handing diagnoses out but I'm reading in haste and may be missing something obvious, in which case I hope someone will point it out to me. Haven't had time to look for the Isle of Man study, sorry.

 

[Clio]

Do you have a reference for that?

Do you have references for this, also?

The ministry of health in Czechia used the statistic that around 10-20 people that are hospitalized every year have a G93.3 diagnosis on their record as a basis for claiming everything is fine and nobody has ever been mistreated. Despite the fact it is impossible to get disability for this diagnosis, you have to get it for a mental illness and still risk having to fight it in courts (in person, has to be in person) for a decade of your life. Of course because the problem has never been officially recorded it doesn't exist in their minds. I wish the situation was different

Source is in Czech, every patient diary on this website supports the claims though https://me-cfs.eu/zapisniky-pacientu/daniela-odmitnuti-nemocnici/

EDIT: over 40% of patients claim they have never received a diagnosis of ME/CFS, which may not necessarily mean the rest have G93.3 in their records. There is also the possibility of false positives and negatives but I think a number as big as this shows a huge problem.

Source: https://neunavni.cz/wp-content/uploads/2024/02/Studie-Situace-pacientu-s-ME_CFS-v-CR-2024.pdf

 

[V.R.T.]

Plus the new crop (numbers unknown) of people who meet the criteria for an ME/CFS diagnosis but have 'Long Covid' or 'FND' on their records instead.

If a drug were discovered to be 100% effective and a permanent cure for all pwME (life is never that simple I know), we would still have a fight with the BPS people on our hands, because pwME misdiagnosed with serious untreatable depression or FND or whatever who have no idea ME/CFS exists would need to be identified and treated. And I think there are probably quite a lot of them.

The long covid people will be much easier to identify and treat.

 

[Turtle]

If it depends on my GP I'd be the last to know about treatment.

 

[rvallee]

I disagree. If there was a clear cut treatment the resistance to it wouldn’t stand a chance in the face of the evidence and the vast majority of healthcare practitioners would forget any misgivings they previously had.

Most people in the NHS don’t wilfully want people to be ill or to suffer. The problems have arisen because they don’t have clear tools or treatments.

It's a problem of ability. No health care system in the world has the capacity to reach even 10% of people with ME/CFS, they just don't keep records of it. This is why proper record-keeping is important, you can't ever know what data will be important, but when you fail to keep track of them, there is simply no way to unwound things. And no one can claim they didn't understand this, because they will all whine about how it's not their fault.

It's going to fall on us to do it, or it just won't happen. There won't even be apologies, let alone efforts to undo the harm. We will likely have to fight every step of the way, old habits die hard. Unless by then AI medicine has reached maturity, of course. This is a human nature problem and as long as we are dealing with humans, they will block everything we do, even if passively. Which would be an upgrade over actively blocking. We can only truly work around egos and hubris by working around human nature.

Frankly, AI medicine is the only relevant factor, because the next few years will see massively degrading chaos in health care because of demographic collapse. Much of the stability we saw in the world was down to the baby boom generation, because it meant more people working full time than children or seniors.

This is one factor for the regression over the last 2 decades, this balance is tipping towards societies where there is barely one full time worker for every child under working age or retired senior. Health care barely exists as a stable concept anymore for anyone under the age of 65, the capacity simply does not exist, in part because there has been no increase in total productivity, and overall health seems to be declining. People die less, but they are less healthy, which is the most expensive scenario. For the rest of us it's good luck getting 5 minutes between 'real' appointments.

The old order is gone. Public health no longer exists as a concept, individual risks are a matter of personal finances and luck. And as we've seen with Long Covid, every single government is uninterested in spending money to save money, in fact would rather spend money to lost even more, they all prefer to ignore problems like LC even if it costs them more, simply because either governments only ever do anything with a 1-2 year horizon at most, or are not concerned enough about such things to care. There are no institutions with the kind of long-term outlook to see this through, and health care is extremely local, pretty much has zero leadership.