I can sympathise with ThereforME having started with great purpose and intention driven by the obvious urgency of need, and seeing that a few years down the line so little has changed, they might understandably feel a bit of a failure. But when you're up against enormous institutional wilful blindness and the victim-blaming that comes from that, change does take time. It's turning a supertanker. That's not to say we should accept slow progress but I do think it isn't necessarily that one's own 'ask' was misdirected because it hasn't immediately brought recognition from people who are highly motivated not to recognise it.
United Kingdom: News from #There for ME
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Nightsong
Senior Member (Voting Rights)
About a month ago, I left a comment on Karen's Substack post:
NS
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.
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.
Peter T
Senior Member (Voting Rights)
Well written. I agree that the biggest risk of more funding in the current situation is just more BACME type gaslighting and harm, in deed they are already positioning themselves to support member services moving into care for severe and very severe ME/CFS, should such be commissioned, a potentially nightmare situation with more suffering and perhaps even more avoidable deaths.
Binkie4
Senior Member (Voting Rights)
Well said @Nightsong. Thank you.
InitialConditions
Senior Member (Voting Rights)
ThereForME is now a registered charity.
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bicentennial
Senior Member (Voting Rights)
That is lovely news, thankyou.