UK BACME ME/CFS Guide to Therapy 2025

bobbler said:
now we have an 'its called rehab so it must make people better not harm them and make them worse' fallacy being dog-whistled
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They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.
 
Kitty said:
They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.
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Yes and I hope they don’t try and do the Tyson Trap of quoting endless amounts of “how to validate questionnaires” and other non-relevant red herrings.

Does this method work? Show workings.

BACME - should try backing pwME instead.
 
Kitty said:
They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.
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Yes. It would be

But I think the problem begins before lack of evidence for their practices. They're beginning something that they have no business even attempting.

Where was or is the evidence that what they do is even worth trying to do?

Who has a solid evidentiary basis for treating patients to these lifestyle and behavioural interventions, what scientific principle do they base their perception of a need for this on?

And of less consequence but further along the path, in an environment of artificially limited resources available for patient interaction and limited capacity for the patient themselves, how do they justify their approach over another one?

Perhaps one very much in the same vein, one where all the patients become [insert religious order or whatever new religious movement] and live lives based upon these teachings?

Or a rather different one, where we all get funded to be taken on a group holiday by these therapists are encouraged to drink alcohol (to build up our tolerance) and lounge by a pool, or on the beach to adjust to bright light and loud laughter and life outside our rooms and narrow existence.

Or anything else other than actual medical care.....
 
Trish said:
Thanks. The current version is on the BACME website. I don't know whether it's the same one you found.
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Yes, this is the same document I found loaded onto the Sutton hospital website (post #127). They are both dated Aug 21, which is just after the Nice guidelines were due to be released, but were delayed by the RCP kerfuffle, eventually being released late in Oct 2021. So the Bacme material was ready to take over. Sort of "Nature absorbs a vacuum".

Nice guidelines were due to be released in mid August 2021 but were delayed. Bacme guidelines are dated Aug 2021. https://www.meresearch.org.uk/nice-guideline-11th-hour-delay/ I have no idea if the coordination was planned.
 
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Jonathan Edwards said:
I think it would be useful for any of us with professional viewpoints to formulate thoughts on the guide. I am expecting to feed in to the committee effort to critique it. But I am also wondering about the possibility of something beyond that. Maybe the ideal thing would be get a critique from a group of professionals with rehabilitation expertise (I am accredited but did not focus on rehab) to publish something in a journal such as BMJ. There is likely to be resistance but it may be worth a try. Ilora Finlay would be a good person to recruit but she might not want to get involved.
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@Jonathan Edwards
@PhysiosforME

I have shared this thread with BPS colleagues to alert them to this publication. Should get a chance personally to take a detailed look towards the weekend. Do keep me in the loop. Thanks.
 
Ash said:
Yes. It would be

But I think the problem begins before lack of evidence for their practices. They're beginning something that they have no business even attempting.

Where was or is the evidence that what they do is even worth trying to do?

Who has a solid evidentiary basis for treating patients to these lifestyle and behavioural interventions, what scientific principle do they base their perception of a need for this on?

And of less consequence but further along the path, in an environment of artificially limited resources available for patient interaction and limited capacity for the patient themselves, how do they justify their approach over another one?

Perhaps one very much in the same vein, one where all the patients become [insert religious order or whatever new religious movement] and live lives based upon these teachings?

Or a rather different one, where we all get funded to be taken on a group holiday by these therapists are encouraged to drink alcohol (to build up our tolerance) and lounge by a pool, or on the beach to adjust to bright light and loud laughter and life outside our rooms and narrow existence.

Or anything else other than actual medical care.....
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Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are
1. Ensure my organisation looks good
2. Establish ourselves as experts
3. Get public sector cash
4. Sell product on basis of cost savings
5. Get accolades
6. My career/organisation improves off the back of it


It’s not actually anything to do with ME/CFS
 
MrMagoo said:
Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are
1. Ensure my organisation looks good
2. Establish ourselves as experts
3. Get public sector cash
4. Sell product on basis of cost savings
5. Get accolades
6. My career/organisation improves off the back of it


It’s not actually anything to do with ME/CFS
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We may have noticed this. While many have chosen not to, and those aforementioned could not possibly admit to as much. So for now, for purposes of securing funding for our necessary involvement supporting this project, we remain the patient.
 
Binkie4 said:
Yes, this is the same document I found loaded onto the Sutton hospital website (post #127). They are both dated Aug 21, which is just after the Nice guidelines were due to be released, but were delayed by the RCP kerfuffle, eventually being released late in Oct 2021. So the Bacme material was ready to take over. Sort of "Nature absorbs a vacuum".

Nice guidelines were due to be released in mid August 2021 but were delayed. Bacme guidelines are dated Aug 2021. https://www.meresearch.org.uk/nice-guideline-11th-hour-delay/ I have no idea if the coordination was planned.
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In case it is of use I remember nosing into this one a while back and then looking at the paper that they quote at the very start and seem to base the whole theory on of 'dysregulation@ and the authors list including someone who has an undergraduate or something

https://www.s4me.info/threads/unite...tion-of-clinicians-in-me-cfs.7900/post-416025
 
Trish said:
I agree, it's full of weirdnesses.

I think the amount of detailed comment we make probably depends on the purpose of any document we produce.
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Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.
 
Sasha said:
Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.
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Maybe doing both?

One shorter and to the point critique, and then a detailed assessment if they just brush it off?

If this really is their crown jewel, it might be good to demonstrate just how bad absolutely everything in it is.

Or maybe some of the medically trained members could break down the types of mistakes they’ve made, showing that it’s not just about not understanding ME/CFS, but also that they make basic scientific mistakes, don’t understand how the medical system works in general, are completely detached from reality wrt how other conditions are managed, and so on.

Essentially show everyone that the emperor is in fact completely naked.
 
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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Agree with all this. I’ve only read parts of this thread and none of the document so apologies if this is a repeat or not relevant but ideally we need specialist physicians with links to research institutions.

Thanks to all who are helping with this. Sorry I don’t have the capacity to volunteer at the moment.
 
Sasha said:
Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.
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Definitely. We have seen how this is how it almost always goes. There need to be as few points as possible and they need to all be major issues so that whatever number of those they choose to focus on it's only about major flaws.
 
rvallee said:
There need to be as few points as possible and they need to all be major issues so that whatever number of those they choose to focus on it's only about major flaws.
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Depends on the presentation, but there is at least one way of doing both.

That's to identify, say four major issues that run through the document. Describe them in 12-point bold type and quote examples from various part of the document below in 9- or 10-point regular.

That's both quickly skimmable and a detailed critique.
 
bobbler said:
In case it is of use I remember nosing into this one a while back and then looking at the paper that they quote at the very start and seem to base the whole theory on of 'dysregulation@ and the authors list including someone who has an undergraduate or something

https://www.s4me.info/threads/unite...tion-of-clinicians-in-me-cfs.7900/post-416025
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Thank you for raising that. The 2019 Clarke paper you highlighted in your linked post which is quoted at the start of the BACME dysregulation model document.

Network structure underpinning (dys)homeostasis in chronic fatigue syndrome; Preliminary findings, 2019, Clark, Newton et al.

The BACME dysregulation model document starts with a quote from this paper

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-system illness that affects many different aspects of the body’s physiology. Current research indicates dysregulation of several systems in the body which may explain the wide range of symptoms that people experience. the key pathology which underpins CFS is potentially best understood in computational terms as resulting from altered messages passing amongst homeostatic networks (Clark et al 2019)
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What they don't mention in using this quote as if it were established science and the cornerstone of their dysregulation model, is that the paper quoted is based on very small samples and says itself that it's a preliminary study, and needs replication with much larger samples before conclusions can be drawn.
I note also that this research is part of the Julia Newton series of studies that seem to be, from memory and from a quick glance through thread titles, largely based on autonomic and HPA axis studies. If that's the area you research, then it's not surprising you and your colleagues doing small preliminary studies will find something.


The BACME dysregulation model document then oulines in simple terms how different parts of the autonomic, HPA axis, mitochondria and central sensitisation supposedly work and cause symptoms common in ME/CFS and creates a story about what is happening in ME/CFS.

They admit along the way that their model may be wrong:

"Although our understanding is still developing around the biological pathways for thisillness, current information suggests multisystem involvement."

But they still go on to create a hypothesis linking it all together and concluding with a list of treatments, forming the supposed justification of their treatment program.

They give no evidence that the changes they say are happening in ME/CFS can be reversed by any of the treatments they recommend.

What can be done about dysregulation?

As these are complex systems that need to regularly adjust and change in response
to demands and our world, it is difficult to find one factor that will correct
dysregulation. However, we know factors that can aggravate dysregulation along
with strategies that can improve stability and support homeostasis.

The approaches that can be helpful to therapy include:
• Regulation of the body clock and circadian rhythms, including sleep, light and eating patterns
• Desensitisation of the sympathetic nervous system and increasing the parasympathetic response.
• Supporting orthostatic tolerance through fluid levels and management techniques.
• Matching energy availability and energy expenditure, understanding that there are different currencies for different types of activity, such as physical, cognitive, social and emotional. Working within the energy envelope, not pushing outside of it.
• Working aerobically within tolerance levels and reducing heart rate at rest and on exertion.
• Minimising immune activation and triggers for increased inflammation
• Balancing and managing overall demands and activity to remain within limits and allow recovery, reducing the impact of a boom-and-bust pattern on the HPA.
• Recovery time for restorative rest following exertion to allow return to baseline
• Ensuring diet is providing appropriate nutrients and delivered in different ways, for example by eating smaller portions more often, supports regulation of blood sugar levels.

Initially the focus is on consistency and regulating, to support stability before increasing the level of demand. This should be done gradually allowing developmentof tolerance and adaption prior to any further increases in demand, to enable the body to rebalance.

Therapy programmes should work on different phases of stabilisation and then building tolerance. It is important that any strategies are implemented after a careful assessment of the individual’s condition, and which aspects of dysregulation are most prominent and need to be addressed to support greater stability. Understanding how the body’s physiology can be affected by this illness is an important starting point to any therapy programme.
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I've posted this list before on this thread. I want to look now at how each of those supposed treatment targets are interpreted by therapists and the problems they can create by assuming supposed dysregulation and central sensitisation can be fixed by behavioural changes.
 
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I note that the dysregulation model paper is written by a couple of OT's and a GP, with additions by a physio and a nurse. So I would suggest not a team necessarily on top of the whole picture of ME/CFS research.

The following document is reproduced with kind permission from the team at
The Yorkshire Fatigue Clinic:
Dr Sue Pemberton, PhD, MSc, BHSc, Dip COT MRCOT, Therapy Director
Dr Vikki McKeever, MB BS MRCGP General Practitioner with Special Interest in ME/CFS
Joseph Bradley, BSc OT, MRes, MRCOT Clinical Specialist Occupational Therapist
Some additions have also been made by
Dr Pete Gladwell PhD MCSP Team Lead Bristol M.E. Service, North Bristol NHS Trust,
BACME trustee
Anna Gregorowski RSCN, B Sc, MA, Consultant Nurse, TRACCS, UCLH, BACME Chair
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And the document has been reviewed by BACME patient representatives:
Ceri Rutter Chair: Plymouth and District ME/CFS Group, BACME Patient and Public Information Lead
Les Parry BAHons PGCE BACME Trustee and Patient Representative
Rhonda Knight BACME Trustee and Patient Representative
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