Sorry but saying "britain is short of cash" is just buying into the government gaslighting. There's plenty of cash, they just don't want to spend it on the likes of us.
Plenty of cash to fund more warfare. Plenty of cash to bail out corporations.
And the poor and vulnerable are expected to pay for it by giving up even more funding and (dis)services, despite the UN stating britain is in breach of international human rights laws on poverty almost a decade ago.
I think the fundamental thing that needs to change is to stop acting as if our government is acting in good faith - they aren't. DHSC is rotten to its core and not fit for purpose. Health ministers have no clue and just repeat what they are briefed. Which is why all our parliamentary answers sound like carbon copies.
We have to stop politely asking ebeneezer scrooge for some fucking funding and instead scare the life out of him.
We need our charities to grow a pair of ovaries and stop pretending that the crumbs the govt gives them to keep them quiet are progress. We need them to stop acting supposedly on our behalf in secret. All the charities that are working with the govt on their precious plan are under NDA so they can't even tell us what's been happening without the govt ok'ing it. See MEA's latest "update" on the non-delivery plan.
And maybe stop referring to their BS as the "final delivery plan". How can it be final when it lacks so much, not least anything for the severe. Call it their "bad attempt at plastering over the ruin of their own failures." Don't "whisper" that it might not be the answer when just about every single pwME said it was inadequate right from the get go. It never was the answer. It was just another attempt at a cheap way to shut us up.
And you think the "NHS template service specification" is progress? Does it involve services that are led by medical doctors, not OT's or psychs? Does it involve off label prescriptions of a bunch of stuff we know can help? Does it involve ANY of the latest science? Provisions for 2-day cpet's or similar? Probably not - but we don't know, because the people doing the negotiations supposedly on our behalf are under fucking NDA. Is it largely designed by fucking bacme? I would not be surprised if it was given they have their fingers in all the fucking pies, poisoning all the wells.
More importantly, is it enforcable? The NICE guidelines clearly aren't and so their impact is hugely minimised because the zealots just shrug and ignore them. The same for their shitty e-learning courses. That's not progress. That's GASLIGHTING.
And maybe some of AfME's "parliamentary champions" can ask the govt why they keep gaslighting us, not just merely asking the same questions and getting the same carbon copy answers, that are quite obviously lies, half truths and PR speak. Maybe use the next parliamentary q to call out these BS answers instead of proudly parading them for our community as if the same empty words, yet again, are some kind of trophy.
And putting all our hopes on the "exploration of a potential service for the (very) severe" is foolish if you ask me. All they have committed to is LOOK at it. I think we all kinda know what their conclusions will be, don't you?
We can't keep positioning this as progress. Meaningful change for us will not happen behind closed doors, in secret, under NDA, working with our abusers.
If we keep repeating the words of our abusers we'll only be locked in deeper in the abuse.
We have to break free, and fucking embarrass or litigate them into meaningful change.
We have to take a leaf out of the norwegian ME association's book, and BUILD a safe ward for the severe ourselves. ME Charities have been funding significantly more research than the UK governemnt. Why aren't we doing the same for care? It is blatantly clear our government and civil service will not deliver any adequate care improvements, as this would require a centre of expertise, and they shut every attempt at one down (or just plain ignore it).
Our charities should stop using OUR donations to fund more bacme "research". More gaslighty apps. Sure, if the govt won't pay for appropriate care, we'll have to fund it ourselves. But at last we could do it in such a way that doesn't give the govt any control on what the money will be spend (wasted!) on.
And yes, we have to get out of our bubble. Have you given any thought to linking up with trans and neurodivergent rights groups? Given that all of us are being targeted by the same hateful folks and their minions on govt and "civil" service?
Thanks Karen. I agree that highlighting the economic fallout from the lack of effective treatment and research could be the most effective method of getting through to government. The days of photos of us all lying in bed and bemoaning our plight should be over. I’ve been guilty here! Alongside the economic messaging I think it’s time we named names and called on people’s accountability.
"photos of us all lying in bed". I'd like more explanation of your thoughts here. I agree that a "poor me" message is totally inappropriate for motivating change at a governmental level, but on the other hand officialdom will never react appropriately if they have no idea what ME & LC are like. How do you convey the awfulness of ruined lives without cringing self-pity? Personally, I think an objective data-driven economic argument needs to be delivered hand-in-hand with the subjective human experience. Thoughts?
I think we've accurately reported on the awfulness of ME enough - whether anecdotal, or in repeated studies that show a lower hr-qol than anything it has been compared to - that by now we can simply say the government doesn't WANT to know, doesn't WANT to acknowledge. Probably because of their culpability to this whole situation, and to avoid the short term costs of making things right.
Which is why I want our charities to stop meekly working with the govt and enabling their gaslighting; and instead challenge and call them out at every turn.
You're quite right, Karen, in that "NHS care for people with very severe ME remains at best absent, at worst unsafe"; although I think this doesn't go nearly far enough: NHS care for almost everyone with ME/CFS is both unevidenced and unsafe, from the most mildly affected to the most severely. The particular difficulties that very severe pwME often face in relation to e.g. feeding problems frequently bring them into conflict with the NHS, of course, but the structural & systemic issues affect all of us.
I'd quibble somewhat with the idea that there is no money. There is: it just goes to psychobehavioural clinics rather than genuine services offering suitable medical care. Only today, in my ME/CFS search alerts, a job advert appeared for a position in such an obviously dreadful clinic:
So there is clearly the money in all manner of NHS Trusts for entire teams of unnecessary psychologists, OTs & physiotherapists engaged in harmful theorising, therapping - and, quite frankly, gaslighting - patients. The money is really a red herring: asking for more in the absence of a fundamental change of direction will only empower such dreadful clinics - & BACME and their ilk - further. Rather, the immediate focus of advocacy in relation to the NHS should be on shutting them down and diverting the money they were wasting towards the setting up of genuinely supportive services that offer patients appropriate medical care devoid of psychobehavioural or rehabilitative inclination.
You have written recently about the epidemiology. While a more up-to-date estimate of the economic burden would certainly be useful for advocacy (you might like to check out the 2023 paper "The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia" for such an estimate in another English-speaking country with somewhat better methodology than usual) - a more accurate estimate of the actual number of pwME in the country is effectively impossible to establish with any measure of certainty given the high level of diagnostic unreliability.
It is reasonably well established that MS & T1D both have a prevalence in the ~0.2% range, and patients with these conditions are not deprived of clinical support or mistreated in the way that we are. There is no need to overestimate the prevalence; that is not the problem. Attempts by the charities to massage the figures by counting 50% of the 2023 ONS LC estimate as pwME, as they have done recently, will not help our credibility.
Unfortunately, with only a few notable exceptions, I do not see amongst the majority of 'official' advocates any great understanding of the fundamental problems that we face. The DHSC process is almost completely opaque but it appears that the principal ME charities have signed up to a DHSC-pushed agenda of "multidisciplinary rehabilitation". This will, of course, make things far worse for us.
I also worry that, given the present state of advocacy, the proposed clinic for the very severe will end up being run along the same lines as the NICPM centre in Leeds. We might even end up with a situation akin to that in Norway, where a "national competence centre" was set up in fulfillment of a political directive that came about as a result of patient advocacy, but the medical establishment there ensured that it was staffed & run along psychobehavioural lines. I understand that some pwME in Norway are now advocating for it to be shut down. We surely do not want that to happen here.
We are going to get precisely nowhere with the two main charities in their current state. MEA are literally funding rehabilitationists. One physiotherapist whom they have funded out of patients' donations believes that "goal-setting" is a treatment for ME/CFS and that pwME raising criticisms of her work are "hysterical". One of their newer employees, hired to liaise with the NHS, has previously written of her belief that chronic pain is a "learned experience". I had higher hopes for AfME after they established a close relationship with the Edinburgh group, but this appears to be an exception to the general rule: the last item on their news page is a mindfulness session.
Until there are radical changes both to NHS provision and to medical education & training we will, unfortunately, continue to be mistreated & to suffer largely in silence.
If we are to make any progress whatsoever, ME/CFS advocacy must finally come of age.
Thank you for this post and the work that you do. The economic message needs to be pushed, for sure - and it needs hard data. I recall seeing stats a long time ago about the cost of developing AIDS treatments vs the economic cost of neglecting people with AIDS and the argument was compelling: can the same exercise be repeated for ME?
Yes, that sounds like a good idea. This is the kind of hard data I would like to have which would make me more confident about contacting MPs and advocating in general.
As Carole says, I think highlighting the economic cost of failure to treat ME and Long COVID is vital. Thanks for your ongoing energy and your commitment to innovating in response to what is a really challenging political social and economic environment.
Thank you for your continued determination which is hard to maintain in the face of years and years of fresh campaigns and brick walls. I have always stressed the economic aspects in letter the MPs, for many years, pointing out that hoping ME can be treated with psychological/biopsychosocial for decades and kicking the can down
The economic angle is the one I keep coming back to. And it's long overdue. Raising awareness is important, but I've always felt that change will only happen when the economic and societal cost becomes too high. We can discuss the moral obligations of a society to help people with disabilities or chronic illness, but when it comes to governments, money is the key driver.
Given that a lot of people with ME can't work, and the fact that more and more people are getting this diagnosis, I think it's only a matter of time before they start to realise the true cost. Because right now they're barely funding research or directing care. And by forcing people who shouldn't work back to work, they're creating the most expensive thing: permanent disability.
Getting health economists genuinely interested in ME might be one of the most useful things advocacy can do. The most recent modelling from Germany showed a staggering societal cost: €64.4 billion in 2025 for ME & Long Covid combined. That's around 1.44% of their GDP. That should scare any (sensible) politician.
You need long-term investments if there's any chance of those costs not spiralling further out of control. But that'll require a government that takes ownership and pursues long-term strategic goals, of course.
Sorry but saying "britain is short of cash" is just buying into the government gaslighting. There's plenty of cash, they just don't want to spend it on the likes of us.
Plenty of cash to fund more warfare. Plenty of cash to bail out corporations.
And the poor and vulnerable are expected to pay for it by giving up even more funding and (dis)services, despite the UN stating britain is in breach of international human rights laws on poverty almost a decade ago.
I think the fundamental thing that needs to change is to stop acting as if our government is acting in good faith - they aren't. DHSC is rotten to its core and not fit for purpose. Health ministers have no clue and just repeat what they are briefed. Which is why all our parliamentary answers sound like carbon copies.
We have to stop politely asking ebeneezer scrooge for some fucking funding and instead scare the life out of him.
We need our charities to grow a pair of ovaries and stop pretending that the crumbs the govt gives them to keep them quiet are progress. We need them to stop acting supposedly on our behalf in secret. All the charities that are working with the govt on their precious plan are under NDA so they can't even tell us what's been happening without the govt ok'ing it. See MEA's latest "update" on the non-delivery plan.
And maybe stop referring to their BS as the "final delivery plan". How can it be final when it lacks so much, not least anything for the severe. Call it their "bad attempt at plastering over the ruin of their own failures." Don't "whisper" that it might not be the answer when just about every single pwME said it was inadequate right from the get go. It never was the answer. It was just another attempt at a cheap way to shut us up.
And you think the "NHS template service specification" is progress? Does it involve services that are led by medical doctors, not OT's or psychs? Does it involve off label prescriptions of a bunch of stuff we know can help? Does it involve ANY of the latest science? Provisions for 2-day cpet's or similar? Probably not - but we don't know, because the people doing the negotiations supposedly on our behalf are under fucking NDA. Is it largely designed by fucking bacme? I would not be surprised if it was given they have their fingers in all the fucking pies, poisoning all the wells.
More importantly, is it enforcable? The NICE guidelines clearly aren't and so their impact is hugely minimised because the zealots just shrug and ignore them. The same for their shitty e-learning courses. That's not progress. That's GASLIGHTING.
And maybe some of AfME's "parliamentary champions" can ask the govt why they keep gaslighting us, not just merely asking the same questions and getting the same carbon copy answers, that are quite obviously lies, half truths and PR speak. Maybe use the next parliamentary q to call out these BS answers instead of proudly parading them for our community as if the same empty words, yet again, are some kind of trophy.
And putting all our hopes on the "exploration of a potential service for the (very) severe" is foolish if you ask me. All they have committed to is LOOK at it. I think we all kinda know what their conclusions will be, don't you?
We can't keep positioning this as progress. Meaningful change for us will not happen behind closed doors, in secret, under NDA, working with our abusers.
If we keep repeating the words of our abusers we'll only be locked in deeper in the abuse.
We have to break free, and fucking embarrass or litigate them into meaningful change.
We have to take a leaf out of the norwegian ME association's book, and BUILD a safe ward for the severe ourselves. ME Charities have been funding significantly more research than the UK governemnt. Why aren't we doing the same for care? It is blatantly clear our government and civil service will not deliver any adequate care improvements, as this would require a centre of expertise, and they shut every attempt at one down (or just plain ignore it).
Our charities should stop using OUR donations to fund more bacme "research". More gaslighty apps. Sure, if the govt won't pay for appropriate care, we'll have to fund it ourselves. But at last we could do it in such a way that doesn't give the govt any control on what the money will be spend (wasted!) on.
And yes, we have to get out of our bubble. Have you given any thought to linking up with trans and neurodivergent rights groups? Given that all of us are being targeted by the same hateful folks and their minions on govt and "civil" service?
Thanks Karen. I agree that highlighting the economic fallout from the lack of effective treatment and research could be the most effective method of getting through to government. The days of photos of us all lying in bed and bemoaning our plight should be over. I’ve been guilty here! Alongside the economic messaging I think it’s time we named names and called on people’s accountability.
"photos of us all lying in bed". I'd like more explanation of your thoughts here. I agree that a "poor me" message is totally inappropriate for motivating change at a governmental level, but on the other hand officialdom will never react appropriately if they have no idea what ME & LC are like. How do you convey the awfulness of ruined lives without cringing self-pity? Personally, I think an objective data-driven economic argument needs to be delivered hand-in-hand with the subjective human experience. Thoughts?
I think we've accurately reported on the awfulness of ME enough - whether anecdotal, or in repeated studies that show a lower hr-qol than anything it has been compared to - that by now we can simply say the government doesn't WANT to know, doesn't WANT to acknowledge. Probably because of their culpability to this whole situation, and to avoid the short term costs of making things right.
Which is why I want our charities to stop meekly working with the govt and enabling their gaslighting; and instead challenge and call them out at every turn.
Thank you, Karen, I'm restacking and hope this is widely read.
You're quite right, Karen, in that "NHS care for people with very severe ME remains at best absent, at worst unsafe"; although I think this doesn't go nearly far enough: NHS care for almost everyone with ME/CFS is both unevidenced and unsafe, from the most mildly affected to the most severely. The particular difficulties that very severe pwME often face in relation to e.g. feeding problems frequently bring them into conflict with the NHS, of course, but the structural & systemic issues affect all of us.
I'd quibble somewhat with the idea that there is no money. There is: it just goes to psychobehavioural clinics rather than genuine services offering suitable medical care. Only today, in my ME/CFS search alerts, a job advert appeared for a position in such an obviously dreadful clinic:
https://www.bmj.com/healthcareers/job/837386/clinical-specialist-occupational-therapist/
So there is clearly the money in all manner of NHS Trusts for entire teams of unnecessary psychologists, OTs & physiotherapists engaged in harmful theorising, therapping - and, quite frankly, gaslighting - patients. The money is really a red herring: asking for more in the absence of a fundamental change of direction will only empower such dreadful clinics - & BACME and their ilk - further. Rather, the immediate focus of advocacy in relation to the NHS should be on shutting them down and diverting the money they were wasting towards the setting up of genuinely supportive services that offer patients appropriate medical care devoid of psychobehavioural or rehabilitative inclination.
You have written recently about the epidemiology. While a more up-to-date estimate of the economic burden would certainly be useful for advocacy (you might like to check out the 2023 paper "The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia" for such an estimate in another English-speaking country with somewhat better methodology than usual) - a more accurate estimate of the actual number of pwME in the country is effectively impossible to establish with any measure of certainty given the high level of diagnostic unreliability.
It is reasonably well established that MS & T1D both have a prevalence in the ~0.2% range, and patients with these conditions are not deprived of clinical support or mistreated in the way that we are. There is no need to overestimate the prevalence; that is not the problem. Attempts by the charities to massage the figures by counting 50% of the 2023 ONS LC estimate as pwME, as they have done recently, will not help our credibility.
Unfortunately, with only a few notable exceptions, I do not see amongst the majority of 'official' advocates any great understanding of the fundamental problems that we face. The DHSC process is almost completely opaque but it appears that the principal ME charities have signed up to a DHSC-pushed agenda of "multidisciplinary rehabilitation". This will, of course, make things far worse for us.
I also worry that, given the present state of advocacy, the proposed clinic for the very severe will end up being run along the same lines as the NICPM centre in Leeds. We might even end up with a situation akin to that in Norway, where a "national competence centre" was set up in fulfillment of a political directive that came about as a result of patient advocacy, but the medical establishment there ensured that it was staffed & run along psychobehavioural lines. I understand that some pwME in Norway are now advocating for it to be shut down. We surely do not want that to happen here.
We are going to get precisely nowhere with the two main charities in their current state. MEA are literally funding rehabilitationists. One physiotherapist whom they have funded out of patients' donations believes that "goal-setting" is a treatment for ME/CFS and that pwME raising criticisms of her work are "hysterical". One of their newer employees, hired to liaise with the NHS, has previously written of her belief that chronic pain is a "learned experience". I had higher hopes for AfME after they established a close relationship with the Edinburgh group, but this appears to be an exception to the general rule: the last item on their news page is a mindfulness session.
Until there are radical changes both to NHS provision and to medical education & training we will, unfortunately, continue to be mistreated & to suffer largely in silence.
If we are to make any progress whatsoever, ME/CFS advocacy must finally come of age.
Thank you for this post and the work that you do. The economic message needs to be pushed, for sure - and it needs hard data. I recall seeing stats a long time ago about the cost of developing AIDS treatments vs the economic cost of neglecting people with AIDS and the argument was compelling: can the same exercise be repeated for ME?
Yes, that sounds like a good idea. This is the kind of hard data I would like to have which would make me more confident about contacting MPs and advocating in general.
As Carole says, I think highlighting the economic cost of failure to treat ME and Long COVID is vital. Thanks for your ongoing energy and your commitment to innovating in response to what is a really challenging political social and economic environment.
Thank you for your continued determination which is hard to maintain in the face of years and years of fresh campaigns and brick walls. I have always stressed the economic aspects in letter the MPs, for many years, pointing out that hoping ME can be treated with psychological/biopsychosocial for decades and kicking the can down
As murtoz said:
Governments are not short of cash
Not just in brittain;
They are choosing to fund warfare and cutting healthcare.
That is something all voters should care about and be aware of.
The economic angle is the one I keep coming back to. And it's long overdue. Raising awareness is important, but I've always felt that change will only happen when the economic and societal cost becomes too high. We can discuss the moral obligations of a society to help people with disabilities or chronic illness, but when it comes to governments, money is the key driver.
Given that a lot of people with ME can't work, and the fact that more and more people are getting this diagnosis, I think it's only a matter of time before they start to realise the true cost. Because right now they're barely funding research or directing care. And by forcing people who shouldn't work back to work, they're creating the most expensive thing: permanent disability.
Getting health economists genuinely interested in ME might be one of the most useful things advocacy can do. The most recent modelling from Germany showed a staggering societal cost: €64.4 billion in 2025 for ME & Long Covid combined. That's around 1.44% of their GDP. That should scare any (sensible) politician.
You need long-term investments if there's any chance of those costs not spiralling further out of control. But that'll require a government that takes ownership and pursues long-term strategic goals, of course.