UK BACME ME/CFS Guide to Therapy 2025

They really need to explain how it is they think swapping life necessary activities like hygiene, food preparation etc etc for exercise will somehow be a better activity that brings benefits where similar levels of exertion in other activities wont. Its simply not sufficient to suggest that this is the route when people do not have sufficient energy to sustain normal lives. PEM is not benign, it causes permanent worsening in so many people with this disease, it kills people, its not something to be toyed with. Why do pointless low necessity things like exercise where there is zero evidence it is in any way helpful let alone more important than life essentials.
 
I have read several times through this therapists guide and the BACME dysregulation model and drawn up a brief summary of what I see happening here. The basic premise is that the BACME therapists have simply replaced the old CBT/GET programs of courses of therapy designed for that model, and slotted into the same programs a different 'scientific model' and program leading from stabilisation to treatment with claims of improvement to discharge back to GP.

They have designed it in such a way that it appears to require pwME after diagnosis to be put through a series of visits with a therapist to be persuaded, trained and managed by an expert therapist. This is the antithesis of honesty and is anti the spirit of the NICE guideline. It creates a much bigger role for therapists than is warranted.

Here's my summary of what has happened:


Old according to 2007 NICE:
Diagnosis by GP, specialist doctor or therapist.
CBT/GET rehab course:
1. Establish trust by saying you believe them, lots of PROMS
2. Explain deconditioning and fear avoidance model
3. Explain stabiisation by cutting back activity and adding rests, lots of diary keeping busy work over several sessions
4. Explain CBT/GET
5. Lots or repetition and encouragement, planning, goal setting, promises of recovery
6. Reinforcement of model and process. Lots more PROMS
7.Discharge back to GP
8. No follow up or records of harm

Current, according to BACME, claimed to be NICE 2021 compliant
Diagnosis by GP, specialist doctor or therapist.
Rehabilitation model from this document
1. Establish trust by saying you believe them, lots of PROMS
2. Explain HPA axis, stress hormones and mitochondrial dysregulation and central sensitisation model
3. Explain stabiisation by cutting back activity and adding rests, lots of diary keeping busy work over several sessions, including sleep hygiene, diet, and other aspects of life, all justified by their 'science'
4. Explain gradual self directed increases in exposure to exertion and sensory stimuli to desensitise, claims that therapists can advise on who and when to increase exposure
5. Lots or repetition and encouragement, promises of improvement
6. Reinforcement of model and process. Lots more PROMS
7.Discharge back to GP
8. No follow up or records of harm

What we need:
Diagnosis by specialist doctor
NO rehab program.
1. Explanation that cause is not yet established and there is no treatement.
2. Information of management self-directed with information on what patients find helpful to reduce PEM, from specialist nurse or OT
3. Accessible nurse or OT support with practicalities resulting from limitations as needed, including aids and adaptations for home, work, school, help with getting financial support and personal care
4. Accessible specialist doctor for prescription of symptomatic treatments and regular reviews
5. Accessible dietician, physio, specialist nurse, counsellor, OT for aids and adaptations, as needed
6. Specialist home and hospital care as needed for severe and very severe ME/CFS.
 
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plan of action:

I have been working on a draft document to be sent to BACME and/or ME/CFS charities, government working parties and anyone else relevant, possibly as an official S4ME position statement, to be decided.

I intend in the next few days to invite volunteers to join me in a private conversation to jointly produce a draft that we can put to the committee and/or members for approval and/or amendment.

I have names of 3 people who have expressed interest in helping so far. If you would like to join this private drafting group, please let me know either on this thread or privately.

If you have any ideas to add to this discussion, comments or criticisms about my plan or anything else, please say so.

I don't have the stamina to make this a lengthy multi stage consultation process like I did with the PEM fact sheet, so please don't expect me to invite everyone to take part at this stage, though I do want to include members in some way and will continue to read and discuss on this thread.
 
Trish said:
I have names of 3 people who have expressed interest in helping so far. If you would like to join this private drafting group, please let me know either on this thread or privately.
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I will be in Argentina for the next 3 weeks but online as usual. I am happy to try to help. I think it may be useful to make use of the fact that I am a physician accredited in rehabilitation medicine and as such I think the document is entirely unjustified.

As you imply, terms like collaboration and engagement are inappropriate. All that professionals can do is offer some advice based on other patients' experiences. Patients are under no obligation to follow any plans.
 
Trish said:
I have read several times through this therapists guide and the BACME dysregulation model and drawn up a brief summary of what I see happening here. The basic premise is that the BACME therapists have simply replaced the old CBT/GET programs of courses of therapy designed for that model, and slotted into the same programs a different 'scientific model' and program leading from stabilisation to treatment with claims of improvement to discharge back to GP.

They have designed it in such a way that it appears to require pwME after diagnosis to be put through a series of visits with a therapist to be persuaded, trained and managed by an expert therapist. This is the antithesis of honesty and is anti the spirit of the NICE guideline. It creates a much bigger role for therapists than is warranted.

Here's my summary of what has happened:


Old according to 2007 NICE:
Diagnosis by GP, specialist doctor or therapist.
CBT/GET rehab course:
1. Establish trust by saying you believe them, lots of PROMS
2. Explain deconditioning and fear avoidance model
3. Explain stabiisation by cutting back activity and adding rests, lots of diary keeping busy work over several sessions
4. Explain CBT/GET
5. Lots or repetition and encouragement, planning, goal setting, promises of recovery
6. Reinforcement of model and process. Lots more PROMS
7.Discharge back to GP
8. No follow up or records of harm

Current, according to BACME, claimed to be NICE 2021 compliant
Diagnosis by GP, specialist doctor or therapist.
Rehabilitation model from this document
1. Establish trust by saying you believe them, lots of PROMS
2. Explain HPA axis, stress hormones and mitochondrial dysregulation and central sensitisation model
3. Explain stabiisation by cutting back activity and adding rests, lots of diary keeping busy work over several sessions, including sleep hygiene, diet, and other aspects of life, all justified by their 'science'
4. Explain gradual self directed increases in exposure to exertion and sensory stimuli to desensitise, claims that therapists can advise on who and when to increase exposure
5. Lots or repetition and encouragement, promises of improvement
6. Reinforcement of model and process. Lots more PROMS
7.Discharge back to GP
8. No follow up or records of harm

What we need:
Diagnosis by specialist doctor
NO rehab program.
1. Explanation that cause is not yet established and there is no treatement.
2. Information of management self-directed with information on what patients find helpful to reduce PEM, from specialist nurse or OT
3. Accessible nurse or OT support with practicalities resulting from limitations as needed, including aids and adaptations for home, work, school, help with getting financial support and personal care
4. Accessible specialist doctor for prescription of symptomatic treatments and regular reviews
5. Accessible dietician, physio, specialist nurse, counsellor, OT for aids and adaptations, as needed
6. Specialist home and hospital care as needed for severe and very severe ME/CFS.
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Good summary

I’d add in how damaging , and I mean intensively life long damaging the deceit has been and is. Along with what they like to call some entitlement to ‘going multidisciplinary’ which includes meaning we can’t trust that something with a straightforward role to discuss a specific thing isn’t instead taking advantage of our exhaustion and cognitive exhaustion to ask questions or parse our words on entirely different things that they never were either licensed or knowledgeable in,

It would make a well person feel unsafe because they would be unsafe, before you add in being vulnerable due to being ill exhausted and having had years of similar people writing fibs on your records to undermine you.

In summary the above list is correct but it needs to be safe people who I don’t think are most of those from backe who are unsafe as examples by their beliefs they’ve plonked down in a manifesto above and the intentions they’ve made somewhat clear.

I dream of a day I can feel there is some safety and peace for me and I could access support I need without thinking the risk is that will lead to my current situation instead being made worse. And the risk of escalation due to the false narratives + people not understanding how exhausted and ill we are so have to ‘answer to/explain ourselves’ to such false accusations becomes impossible and draining and then because we’ve been drained by doing that for the fortnight instead of getting rest and essential tasks done we look like ‘see you can look after yourself’ when really that act has been an aggression causing that. At the moment that can happen over and over so within the space of weeks those ‘helpers’ have made us unable to function or defend ourselves and very much iller temporarily at least (IF we then got weeks to recover it would be temporary) . Ie this power that shouldn’t be in said people’s hands as they aren’t responsible, licensed or qualified and are getting into such positions under false pretences (of practical support) is then used as a weapon by the wrong people.

I note this because this fact has prevented access to anything safely for decades. And I can only dream of teams of safe hands one day who can be safe and trusted and aren’t instead staring at us to make up notes or catch us out on words. But even when some of us get that those good ones do need to be aware of acknowledging and understanding what we have been through as there will be a period of us being wary until we can be reassured we aren’t being tricked because of how bad these people have been.

And how saying we’ve changed or we are different is neither a proper self awareness or acknowledging nor confirmation that’s happened but a way that has been used by those who haven’t to infer to bystanders we are either anxious or mean for what actually is what we absolutely should be doing and any other human would which is knowing if someone behaved consistently badly then until they’ve thoroughly demonstrated a total change in beliefs and they’ve been both rehabilitated and are under oversight to prevent them being like that then we should not be expected to trust people who did this.

The entitlement of someone thinking they can write another fairy tale about us and carry on helping themselves to interfering and ruining our lives and speaking over us … wel… people really need to imagine how inappropriate that is and that yes we do need to be both protected from it, constantly reassured properly (not with ‘everyone’s changed’ but details confirming ‘they can’t do it anymore to you’) and understanding.

This is not a ‘mental health’ thing but a very physical and don’t ask people to put themselves in a position where they are risking more of their safety without knowing you have to demonstrate this situation. Just like a car company that was having to get past public safety failures can’t just think they’ve fixed it and assume those not willing to use them have any mental health anything but it’s them with the problem who need to demonstrate now that they are safe to use and to realise that no they can’t get annoyed that they can’t assume and require others just trust them when the record says otherwise until they’ve proven differently by consistently ongoing improved behaviour.
 
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bobbler said:
I’d add in how damaging , and I mean intensively life long damaging the deceit has been and is. Along with what they like to call some entitlement to ‘going multidisciplinary’ which includes meaning we can’t trust that something with a straightforward role to discuss a specific thing isn’t instead taking advantage of our exhaustion and cognitive exhaustion to ask questions or parse our words on entirely different things that they never were either licensed or knowledgeable in,
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bobbler said:
I dream of a day I can feel there is some safety and peace for me and I could access support I need without thinking the risk is that will lead to my current situation instead being made worse.
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Very well said Bobbler. It's not just a matter of useless therapy programs, it's so very harmful in so many ways and they are depriving us of the real medical support we need.
 
Trish said:
What we need:
Diagnosis by specialist doctor
NO rehab program.
1. Explanation that cause is not yet established and there is no treatement.
2. Information of management self-directed with information on what patients find helpful to reduce PEM, from specialist nurse or OT
3. Accessible nurse or OT support with practicalities resulting from limitations as needed, including aids and adaptations for home, work, school, help with getting financial support and personal care
4. Accessible specialist doctor for prescription of symptomatic treatments and regular reviews
5. Accessible dietician, physio, specialist nurse, counsellor, OT for aids and adaptations, as needed
6. Specialist home and hospital care as needed for severe and very severe ME/CFS.
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This sounds great, Trish. After 'No rehab programme' I'd be tempted to add 'No unevidenced speculation about cause'.

But however it's presented, I think that needs underlining—it could be one of the more convincing arguments that their approaches aren't evidenced and therefore shouldn't be used in healthcare. People actually trained in medicine might find it hard to object to suggestions that HPA-babble and mito-babble are just that.
 
BrightCandle said:
They really need to explain how it is they think swapping life necessary activities like hygiene, food preparation etc etc for exercise will somehow be a better activity that brings benefits where similar levels of exertion in other activities wont. Its simply not sufficient to suggest that this is the route when people do not have sufficient energy to sustain normal lives. PEM is not benign, it causes permanent worsening in so many people with this disease, it kills people, its not something to be toyed with. Why do pointless low necessity things like exercise where there is zero evidence it is in any way helpful let alone more important than life essentials.
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They'd simply say that we don't have a deficit of energy. And in a strictly medical sense it's true, in that 'true' pathology can only be the destructive kind that makes a process impossible or structurally broken. Which is a problem of how medicine works, not how biology actually works. It's, ironically, entirely a problem of perception.

It doesn't matter that it's irrelevant and misdirection. They don't actually have to explain anything, it turns out. This is really the lesson out of all of this, decades spent crafting fake explanations and models and it turns out no one even cares for that.

The essence of this ideology is to make the goal into a plan. The goal is to be active, therefore the plan is to activate. This is a bankrupt way of doing anything, it's basically how to fail. Because the plan and the goal can never be the same, in part because any measure about the plan can be attributed to the goal. Nothing works like that.

So if someone does a little strength training, even if they can do very little, they will become a little bit stronger. The goal, which is also the plan, can be made to simply become stronger, in fact most trials about this do exactly that. They may not be able to do more, they'll just get a bit better at it. It doesn't matter that it has nothing to do with the problem, because they made the solution to also be the problem.

If humanity actually survives and matures, this is going to be studied for centuries as the most perfect example of expert failure. It's genuinely impressive to align such perfect streaks of failure like that. It's statistically impossible to achieve this without meaning to. Not improbable, straight up impossible.
 
Kitty said:
This sounds great, Trish. After 'No rehab programme' I'd be tempted to add 'No unevidenced speculation about cause'.

But however it's presented, I think that needs underlining—it could be one of the more convincing arguments that their approaches aren't evidenced and therefore shouldn't be used in healthcare. People actually trained in medicine might find it hard to object to suggestions that HPA-babble and mito-babble are just that.
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Yes. The foundation stone. People, professionals, who feel free to invent and recycle stories about us, our minds and bodies.

Based upon nothing. A whim. A sand castle.

No room for scientific rigour or ethics here.

A material need to preserve a long held paid role, for themselves exploiting the information gap and our predicament.
 
Trish said:
What we need:
Diagnosis by specialist doctor
NO rehab program.
1. Explanation that cause is not yet established and there is no treatement.
2. Information of management self-directed with information on what patients find helpful to reduce PEM, from specialist nurse or OT
3. Accessible nurse or OT support with practicalities resulting from limitations as needed, including aids and adaptations for home, work, school, help with getting financial support and personal care
4. Accessible specialist doctor for prescription of symptomatic treatments and regular reviews
5. Accessible dietician, physio, specialist nurse, counsellor, OT for aids and adaptations, as needed
6. Specialist home and hospital care as needed for severe and very severe ME/CFS.
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The whole summary is impressively detailed no wonder you're exhausted. This is such a unnecessary burden to place upon pwME & their people.

I am so grateful you're here and using your precious energy to unburden us.

Your list of remedies is excellent.
 
BrightCandle said:
They really need to explain how it is they think swapping life necessary activities like hygiene, food preparation etc etc for exercise will somehow be a better activity that brings benefits where similar levels of exertion in other activities wont. Its simply not sufficient to suggest that this is the route when people do not have sufficient energy to sustain normal lives. PEM is not benign, it causes permanent worsening in so many people with this disease, it kills people, its not something to be toyed with. Why do pointless low necessity things like exercise where there is zero evidence it is in any way helpful let alone more important than life essentials.
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Every word, well said.
 
Trish said:
I have read through the whole document. I find it a mess of patronising, interfering micromanagement by busybody therapists. I'm glad I wasn't subjected to this sort of therapy but was left to find my own ways of coping, with just a couple of books I came across that had sensible advice about pacing to avoid PEM as much as possible.

I would have been much better served by a practical assessment and provision of home and work adjustments needed and provision of more practical help and aids, along with straightfoward one or two page guide to pacing to reduce PEM, with realistic warnings of the potential for long term deterioration from repeatedly pushing past my limits.

This whole thing is all about therapists keeping their jobs and self esteem. The NHS can't afford to spend thousands per patient to be subjected to this sort of therapy, especially when they are not providing any funding for the desperately needed medical and home care for people with severe and very severe ME/CFS.

And worse still, there is no evidence it's any use to anybody, apart from the initial patient education about managing to reduce PEM, and the help with school, employers and benefit applications. Pacing up, goal setting, encouragement to keep trying small increases, carries a real risk of pushing people into severe ME/CFS.

As you can probably tell, I'm seriously pissed off with this. I tried so hard to explain to Pete Gladwell that the 'pacing' he describes as effective for general pain and fatigue patients does not translate across to people who get PEM. He refused to listen. He's one of the authors of this document. Pete Gladwell, if you are reading this, shame on you.
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Shame indeed.
 
Kitty said:
They'd probably fully support them.

For me, the outrage is not so much that a gap in provision has been filled by hopelessly inadequate people, it's that the gap exists in the first place.

I have asthma, which has never shown signs of escalating into anything more than an inconvenience, yet my GP is happy to treat and manage it. So why is it okay for people with a serious disabling illness to be treated by a bunch of people whose own publications trumpet their ignorance? Who're not even qualified doctors?
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Yes.

Enduring suffering and death absent medical care.
 
Eleanor said:
Always this tap-dance around 'flexibility' and 'as needed' (as decided by whom?) and 'likely to be successful but...', and putting the responsibility on the patient to know whether they're doing too much or not enough, but at the same time telling them they're not actually competent to decide for themselves so they need 'support to increase confidence' etc. All to disguise the fact that none of this is based on anything solid.

I knew it reminded me of something when I first read it, and it's this 'Activity pacing strategy' from 1988 https://www.s4me.info/threads/care-...wnload-action-for-me.39801/page-7#post-550101
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putting the responsibility on the patient to know whether they're doing too much or not enough, but at the same time telling them they're not actually competent to decide for themselves

Yes, unacceptable.
 
rvallee said:
I can't help but notice that most of this language is built on FOMO, fear of missing out. It strongly reminds me of gambling marketing when they talk about continuing with the CBT because the possible gains are worth it and if you don't pursue you will have wasted all the effort/money you put in the slot machine before.

Most of the language is just mirage-peddling: you could recover, don't you want to recover? you could be missing out on the best opportunity to recover, all you need is to submit and comply and your wildest dreams will come true because only you stand in the way of achieving them. It borrows from MLM and financial scams more than any other source. For sure this has zero to do with health care, health or anything like it.
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You're quite right.
 
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