UK BACME ME/CFS Guide to Therapy 2025

Sasha said:
My impression is that people have reconceptualised ME/CFS as a temporary state simply in order to be able to apply rehabilitation to it.
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That's pretty much the old biopsychosocial model that started all of this. Doesn't need a reconceptualisation. Or even any conceptualisation. It's just the same old aggressive ignorance that asserts that any pathology medicine doesn't understand now must be psychological and treated as such.

This is just how biopsychosocial everything works. They never actually learn, grow or adapt. They simply move a few bits around, often back to the same place, and never care that nothing they do actually works because no one who pays or oversees them does.
 
Robert 1973 said:
Yes. If I ever recover from my ME/CFS I might need some rehabilitation having spent more than 30 years either in bed or in a wheelchair. Sometimes that hope is all that keeps me going but unless there is a significant improvement in my underlying condition, I can’t be rehabilitated – only helped to managed within the confines of my disability.

After 28 years of severe disability I moved into wheelchair adapted accommodation. I use a powered and manual wheelchairs indoors and out. I have a remote door system, WiFi controlled heating, electric blinds, a wet room, pull down cupboards and wheelchair access to a patio area. All these adaption make a big difference to the quality of my life. That is the sort of help and advice I needed but never got.

Instead I was refused an NHS wheelchair and other mobility aids because I was told that my condition was not permanent. CBT and taught coping strategies were based on the assumption that I would recover. Apart from a couple of kind doctors working outside the system, there were no services to support me when it became increasing apparent that I was unlikely to live anything approaching a normal life again.

My parents were told not to buy me a stairlift because it might disincentivise me from walking up and down the stairs. In hospital I had to urinate into a sink because I couldn’t get the the toilet and the nurses refused to empty my urine bottle and commode. At home I used to urinate into a bottle and crawl on my hands and knees to get to the bathroom once a day until I finally bought a wheelchair. On one occasion it was too much and I had to defecate into the bin.

These are the sort of struggles and indignities that services should be helping patients to navigate and avoid. Instead they just make it worse.

I know most people here understand all this and many have had similar experiences, but sometimes it’s good to spell it out. Maybe there are some BACME people reading this thread who will take heed.
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It is important to spell it out, and I’m sorry you have had to go through that.
 
MrMagoo said:
No, where did it say that?
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It doesn't. I think the point is that if it were designed to help patients, it ought to.

If BACME admitted that recovery is rare, and improvement is often temporary and may be less common than deterioration, they'd have to concede that what they're offering is miserably inadequate. And that the picture of reality they present is so distorted it might qualify as misrepresentation in a legal context.
 
I note that the MS parliamentary debate speeches and questions seem to be underlining the importance of things like support and adjustments being individual in the workplace. I'm sure other conditions have similar points

It has struck me how good @Trish approach with the 3 lists pointing out clearly that this BACME doc/therapy is just the same old thing dressed up (so will surely change nothing) vs what is needed/being asked for is neither rocket science nor should it be beyond the capabilities of people who have similar professional qualifications (albeit we've found out there are some whose specialism is just the psych side, which isn't helpful) ie nurses, OTs in the area of things like adjustments in the home and the workplace. There are potentially some skilled individuals in those professions outside of the more niche behavioural focus who are also good at hearing and really getting themselves up to speed with reading the science and what the condition actually is.

And that the old days of 'promising outsiders the fake unicorn' (and then focusing their measures only on short-term to try and prove claims before the actual impact of a big crash happens 6months later) is what the new Nice guidelines was trying to move people on from.

To be honest this just comes across as so so dated. Cat's out of the bag it doesn't work and there is no new evidence, and if any of this were evidence from what I can see so far these individuals haven't based any of their 'therapy' or 'one-liners' on it, none of these new references are suggesting trials of desensitisation suddenly make it work or that their suggestion of that counterproductive approach is either logical or an idea for any of the models suggested. This is just a load of debunked and not further tested ideologies with a link to a few papers that don't suggest anything of the sort.

A bit more awkward is adding in concerns about seeming to be avoiding the 'real job', which is less glamorous in claims but by being realistic is more impactful and could make a big difference to pwme who are in work and struggling right now. And worse providing misinformation (the suggested ideas aren't even suggested in or connected to the references they provide, even if those were 'evidence of the science') that will directly undermine workplace conversations from being useful and relationships with employers.

Simply because noone is navigating a not unusual conversation with employers for other illnesses that certain quite standard adjustments are common sense and are an important part of making things sustainable ie that their employee isn't 'trying it on' and will still need anti-migraine lighting in 6months time, and in fact with it being delayed that is likely to get worse (as the desensitisation is BS).

I worry when some advocates are focusing on the un-nuanced 'find a cure so we can all get back to work' when so many and in fact probably the common situation is that for ME/CFS there are lots who are in the position right now of still trying to work and struggling to actually get what they need due to being undermined by misinformation and stigma. Help should help, not make relationships worse. And those who left battled on through until they can't even look after themselves (this is perhaps where long covid is different politically, as they roll 'covid more than x weeks' into that).

My gut says maybe by using terms like pragmatic, sustainability-focused and medium-long term focused, keeping people in the workplace for as long as possible by supporting adjustments and tweaks to hours, homeworking (and some blather about preserving skills and experience) is what we have always asked for. ie realistic support. instead of short-termism that historically has lead to - what a shame this same old approach caused so many of us to be unnecessarily worked without adjustments until our health could no longer sustain any work

And obviously being able to have some medical connection (minimal often after the few initial consultations because there may only be a few things that might be helpful to some that might be delivered in primary care ) that is on a long-term basis because we might get other things and when our health does change then timely, and often minor in comparison to long-term deterioration, intervention with adjustments and medical support as relevant from someone who has experience in seeing that full spectrum and so has a sense of what is realistic and understands that long-term outcome is really important

I also think that as this document is claiming 'experts' ( when I'm sure they mean themselves) should train (providing misinformation by this) those others in professions that are needed to support pwme, we need to be underlining that yes due to past misinformation this would be very important - but that it needs to be people who actually know what they are talking about providing stuff that isn't misinformation and actually probably once they've got the penny-drop many of the things needed. And there are people like @PhysiosforME who have 'got it' and others, so I think it might be useful for us to suggest other documents and genuinely trustworthy alternatives for such training?
 
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Kitty said:
It doesn't. I think the point is that if it were designed to help patients, it ought to.

If BACME admitted that recovery is rare, and improvement is often temporary and may be less common than deterioration, they'd have to concede that what they're offering is miserably inadequate. And that the picture of reality they present is so distorted it might qualify as misrepresentation in a legal context.
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Oh it was /s

I did note that in EROS they acknowledges that some people will stop at the second part (aka some people want to stabilise not increase)
 
I’ve been reading a book about tuberculosis, and it describes sanatoriums that were purpose built for treating TB in the late 19th and early 20th century.

The treatment approach was built around doctors having complete control over everything the patients did, so they could «maximise the chance of recovery». They were told when to rest, when and how often to do things, what to read, write and even think. If they did everything right, they had a chance of recovery.

It turns out that it did absolutely nothing to help the patients, other than deprive them of their agency, family, loved ones, joy and probably sanity. There are examples of children of pre-school age that cried during the night or wet their beds that were punished with total isolation during the day.

Edit to clarify: I’m objecting to the «treatments», not the strategy of isolating the infected - that’s a separate issue.​

This BACME document will go down in history the same way that the sanatoriums did.

Would it be useful to draw some parallells in a response to BACME?

Here are some descriptions and images (source):

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The architecture of purpose-built sanatoriums enabled doctors and nurses to monitor patients more closely – the transparent, open-air designs normalised a disciplinarian regime of surveillance, which was a defining feature of tuberculosis treatment in the late 19th and early 20th centuries. From morning to evening, every minute of a patient’s day was regulated: doctors decided what patients ate, how long they were to sleep, and planned mandatory physical exercises and rest periods. In some institutions, patients weren’t even allowed to read or write, as it was thought this could interfere with developing strong “mental hygiene”. In this photograph of Mont Alto Sanatorium in Pennsylvania, USA, male patients can be seen in deckchairs during “rest hour”, under the close surveillance of the doctor.
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Tuberculosis hospitals with spacious grounds often featured ‘chalets’ designed to accommodate patients. Little more than timber huts (that supposedly referenced European health resorts), chalets were used to increase the amount of pure air tuberculosis patients breathed. Isolating patients not only segregated those who were sick and recovering, it also enabled new treatments and cures to be tested. Patients were required to spend extended periods of time in the chalets through winter or summer – some sanatoriums even equipped sufferers with snow-proof blankets. Life in the chalets was lived under the continuous observation of a doctor or nurse.
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Once patients were deemed to be sufficiently recovered, they were required to participate in outdoor exercise drills that took place in all seasons. Militaristic in nature, these exercise regimens aimed to test and improve the strength of the body and character, enabling patients to build up resistance to tuberculosis and perhaps eliminate it altogether. As this French public health poster shows, patients wore as little clothing as possible, in order to benefit from the therapeutic effects of sunshine and fresh air.
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In the early 20th century, tuberculosis ‘colonies’ began to emerge as a form of comprehensive treatment, in which housing, employment and leisure facilities were provided on-site. Papworth Hall Colony in Cambridgeshire, founded by Dr Pendrill Varrier-Jones in 1917, was the largest and most famous of these settlements. At Papworth, patients in recovery were encouraged to work in on-site factories, and the most healthy patients lived in cottages with their families. Some patients stayed in the colony for the rest of their lives, offering an unprecedented opportunity for doctors to observe their patients long-term. Dr Varrier-Jones believed that the tuberculous person’s “whole life, waking, working, sleeping and all the manifold activities of existence [should] be carefully guarded and guided”.
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A tangent, but fresh air cures were a big thing here in the UK too: hospitals with extensive verandas where the beds could be wheeled out, even fresh air schools with classrooms with only three walls.

When my mother was a child in the 1930s the next door neighbours’ young daughter had TB, so they built a shed in the garden for her; she eventually died in that shed. Hearing her coughing through her bedroom window, the shed only being ten or so yards away, was an enduring memory for my mother. A medical fad that saw a teenage girl dying by herself in a small garden shed.
 
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Utsikt said:
It turns out that it did absolutely nothing to help the patients, other than deprive them of their agency, family, loved ones, joy and probably sanity.
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There are good books on this. At the time, it was perfectly well understood by the medical profession and government that sanatoriums were there to isolate TB patients from healthy people and let them die if they were going to. In the UK at least it was a legal issue. Someone with active TB had to isolate. They had their freedom removed for the good of others. And it worked. TB more or less disappeared because of this very successful policy. Drugs came in later and dealt with the few remaining cases only. The situation has now reversed and TB is becoming quite widespread in some UK communities despite drugs being available. Drugs are not an effective answer.

How you view the ethics of this is up to you but my mother and her sisters escaped TB because a housemaid with the disease was sent off early on to die. I see it as one of those situations that existed 100 years ago where the modern view of things may not have been realistic. I don't think there is a parallel with ME/CFS.
 
Jonathan Edwards said:
There are good books on this. At the time, it was perfectly well understood by the medical profession and government that sanatoriums were there to isolate TB patients from healthy people and let them die if they were going to. In the UK at least it was a legal issue. Someone with active TB had to isolate. They had their freedom removed for the good of others. And it worked. TB more or less disappeared because of this very successful policy. Drugs came in later and dealt with the few remaining cases only. The situation has now reversed and TB is becoming quite widespread in some UK communities despite drugs being available. Drugs are not an effective answer.

How you view the ethics of this is up to you but my mother and her sisters escaped TB because a housemaid with the disease was sent off early on to die. I see it as one of those situations that existed 100 years ago where the modern view of things may not have been realistic. I don't think there is a parallel with ME/CFS.
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I can understand the need to isolate the infected to stop the spread of the disease, but why were they also subjected to all kinds of inhumane interventions at some of the sanatoriums?

They could have just isolated them and let them live as well as possible within the limitations of their disease.
 
It’s really bugging me that they can say they're not recommending GET on the basis that GET is fixed increments, irrespective of pain/deterioration.

But they are normalising increasing your activity when it just isn’t possible a lot of the time.
 
Jonathan Edwards said:
At the time, it was perfectly well understood by the medical profession and government that sanatoriums were there to isolate TB patients from healthy people and let them die if they were going to.
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It's an interesting contrast with what happened after WWI, when so many of the soldiers who returned did so with TB.

My great grandfather survived the Battle of the Somme, but died at home of TB a year or so later. My great grandmother remarried to a widower, but he'd contracted TB in awful conditions in the trenches and also died of it. There was a big fever hospital not far away where people with TB had once been cared for in open air wards, but the soldiers weren't sent there; they didn't get any sort of medical care. As far as the government was concerned they weren't war casualties, but they lived in desperate poverty because they couldn't get work either. The wound that waited for the armistice was a grim joke among the widows.
 
I found this study from 2015 from Norway that tested a programme that looks a lot like BACME’s pacing up: group support self management programme led by trained staff and an experienced patient, consisting of education, peer support, focus on acceptance, sharing experiences, goal setting, staying within your «energy envelope» and encouraging increasing activity when stable.

The trial was open-label, care as usual (read: nothing) as control, and subjective outcomes. The intervention was eight meetings over 16 weeks, with follow-up for a year.

Given this setup, and the fact that the participants appreciated speaking to other patients, you’d expect at least some differences between the groups purely based on bias.

There were no differences at all, except for one minor change in favour of the intervention and one minor change in favour of the control at the end of the programme. Both groups were equal at followup.

I think this trial can be used in the response to demonstrate that we know this kind of approach (give «support», stabilise and increase at your own pace) doesn’t work better than letting the patients manage on their own.

 
Utsikt said:
I found this study from 2015 from Norway that tested a programme that looks a lot like BACME’s pacing up
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Utsikt said:
I think this trial can be used in the response to demonstrate that we know this kind of approach (give «support», stabilise and increase at your own pace) doesn’t work better than letting the patients manage on their own.
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Yes, it's a very useful example, thank you.
 
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