UK BACME ME/CFS Guide to Therapy 2025

On the one hand this is quite the usual nonsense so ubiquitous that we're essentially forced to tune out of it to survive.

On the other this is a simultaneous resurgence and retrenchment that could push us all the deeper into abandonment isolation debility and death.

I'm thinking about our future interventions with NHS services of any sort and whether the charities will allow this document to pass and its proponents to further derail such interactions for us.
 
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This is clearly part of a bigger project that ties to our discussions of ELAROS apps, the MEA clinical toolkit and now we see the project to tie it all in with Long covid clinics too, in an NIHR funded research project.

Trish said:
Sigh. It's all coming together in the worst possible way. This links with other discussions we've had
The ELAROS app for LC is the digtal platform developed with Prof Manoj Sivan who is leading this Heritage project and is prof of rehab medicine.
The BACME ME/CFS guide for therapists is intended to integrate with and use:
The MEA ME/CFS Tyson led clinical assessment toolkit and the MEA app to be released in December.
It's like it's all been planned to culminate in this whole disastrous synchrony between Sivan, BACME and the MEA to stitch us up with totally unsuitable therapist led clinics and apps.
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So that's another direction to send our protests about this BACME document.
We are fighting a brick wall.
 
I'd really like to see AfME come out against this.

It could be a turning point for the charity and its relationship with patients. It would take guts—in some ways it's a risk—but it's also a huge opportunity to stand 100% behind science, and to be seen to be doing so.
 
Maybe someone should make a copy of all of the documents on their page?

Resources Archives - BACME

The BACME resource library contains all of our documents, research and other publications relating to ME/CFS.
bacme.info bacme.info

It seems like various parts have been spread far and wide, and it might be worth keeping track of them so they can be corrected later.

I found the v1 of their therapy and symptom management guide here:

C19-YRS also references the BACME dysregulation model and seems to be a copy of one of the older documents:
c19-yrs.me

ME/CFS – Guide to Symptom Management - C19-YRS.me

ME/CFS - A Guide to Symptom Management Menu Aim of this Resource Introduction to ME/CFS Introduction to The Guide to Symptom Management How do these systems work? How do these systems interact with each other? What might go wrong with ME/CFS? What can be done about dysregulation? Resources Back...
c19-yrs.me c19-yrs.me

This document has an «interesting» figure that is supposed to explain the dysregulation model:

While searching for the dysregulation model, this blog post also popped up from when BACME introduced it post-NICE.

BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE guideline

The British Association for Clinicians in ME/CFS (BACME) describes itself as ‘a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.’ Membership is open to clinicians and researchers, including...
domsalisbury.github.io
 
I found this document which includes Bacme's views of the biological basis of ME ( which seems to be focussed on what they call dysregulation) on a local hospital website earlier today ( edit: yesterday) but my brain fog/ cognitive issues are currently so bad that I've only just refound it.

18 page document. Selective references on last page, out of date? No mention of genetics, GWAS or Decode. Unfortunately pages not numbered. Document only scanned. Unable to absorb more currently.

There is a lot more from Bacme on the hospital website - link below. Area covered is South West London and Surrey and used to be Dr Bansal's area.
This is all new since then. I wonder when Bacme started to inveigle their way in, both here and in other area clinics.

https://www.epsom-sthelier.nhs.uk/new-myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs. They claim 94% satisfaction level of " very good" with the service. Provides multiple links to various issues.
 
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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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Well said.
Trish said:
What we need:
Diagnosis by specialist doctor
NO rehab program.
1. Explanation that cause is not yet established and there is no treatment.
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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It is so short, obvious, and unremarkable a list, isn't it. The contrast couldn't be starker.
 
I was at a conference last week where there was a slot on ME. At first I was relieved as there was no mention of GET and then I got more disheartened by all the talk of dysregulation.

I've since gone and read the bacme guide amd done some reading round it all to try amd understand what evidence there might be!!!! Guess what? I haven't found any!

I'm contemplating writing a critique of the guide/the dysregulation therory and wanted to ask if people think this would be useful (and if I can steal any info from this thread to support the critique - anonymously of course)

It has annoyed me so much I feel something needs to be done!!! All and any suggestions gratefully appreciated
 
PhysiosforME said:
I'm contemplating writing a critique of the guide/the dysregulation therory and wanted to ask if people think this would be useful
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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.
 
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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Nice. Thank you. I'll try and thibk through how and what over the next couple of days and come back to you if thats ok
 
I thought I had seen a list of authors for this 2025 draft and I thought it included Peter Gladwell, Anna Gregorowski and maybe Sarah Tyson? I cannot find that list now. Was I dreaming?

I have been reading through the introduction again and it sounds as if it has been written by somebody completely out of touch, and unaware of the existence of real people with ME/CFS who might read it, who has decided the coast is clear and they can just roll out make-believe to justify jobs for the girls and boys with a busybodying approach to other people's suffering. It seems to be a level worse than anything I have seen before but that may just be a shift in expectations.
 
Utsikt said:
Maybe someone should make a copy of all of the documents on their page?

Resources Archives - BACME

The BACME resource library contains all of our documents, research and other publications relating to ME/CFS.
bacme.info bacme.info

It seems like various parts have been spread far and wide, and it might be worth keeping track of them so they can be corrected later.

I found the v1 of their therapy and symptom management guide here:

C19-YRS also references the BACME dysregulation model and seems to be a copy of one of the older documents:
c19-yrs.me

ME/CFS – Guide to Symptom Management - C19-YRS.me

ME/CFS - A Guide to Symptom Management Menu Aim of this Resource Introduction to ME/CFS Introduction to The Guide to Symptom Management How do these systems work? How do these systems interact with each other? What might go wrong with ME/CFS? What can be done about dysregulation? Resources Back...
c19-yrs.me c19-yrs.me

This document has an «interesting» figure that is supposed to explain the dysregulation model:

While searching for the dysregulation model, this blog post also popped up from when BACME introduced it post-NICE.

BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE guideline

The British Association for Clinicians in ME/CFS (BACME) describes itself as ‘a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.’ Membership is open to clinicians and researchers, including...
domsalisbury.github.io
Click to expand...
The Sheffield one was the first one I looked and the last as its so shockingly bad I can't take anymore at this time, but it's a great example of how damaging and dangerous use of the dysregulation model is by service providers, so grateful to everyone who can challenge/critique these
 
Jonathan Edwards said:
I thought I had seen a list of authors for this 2025 draft and I thought it included Peter Gladwell, Anna Gregorowski and maybe Sarah Tyson? I cannot find that list now. Was I dreaming?
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There is this acknowledgements and list of contributors at the bottom of the document linked to in the first post of this thread. Gladwell and Gregorowski are listed, Tyson isn't.

AcknowledgementsWe are grateful to the following BACME members who have contributed significantly to thisGuide, during the extensive writing and review process. We would also like to acknowledgethe indirect input of many of patients in NHS Services who have shared their experiences ofwhat has, and what has not been helpful for them as individuals. The relationships betweenpatients and clinicians have always been a source of learning for clinicians, and this guide is away of encapsulating some of that knowledge so that it can be re-shared.

Contributors:
Joe Bradley, Occupational Therapist
Nikki Andrea, Specialist Physiotherapist
Sally Darby, Specialist Dietitian (with additional input from other dietitians working inME/CFS)
Nina Dunn, Advanced Occupational Therapist
Dr Pete Gladwell, Clinical Specialist Physiotherapist
Anna Gregorowski, Consultant Nurse
Louise Humphrey, Clinical Specialist Children’s Physiotherapist
Rhonda Knight, Patient Representative
Fiona Mckechnie, Advanced Clinical Practitioner, Occupational Therapist
Dr Marta Prytys, Clinical Psychologist
Carol Wilson, Advanced Clinical Practitioner
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I note that they are in alphabetical order apart from Joe Bradley, whose university site says:

Joe Bradley​


Biography​

I am a Lecturer in Occupational Therapy at the University of Huddersfield, with a clinical and academic background in long-term condition management, rehabilitation, and sensory processing in ME/CFS. I contribute to undergraduate and degree apprenticeship programmes, leading modules and designing inclusive learning and assessment strategies that support diverse student needs, academic and professional success.
I hold a Masters in Healthcare Research and a Postgraduate Certificate in Health Professional Education, and I am currently undertaking doctoral research exploring kindness in occupational therapy using a constructivist grounded theory methodology. My research interests include student belonging, placement experiences, occupatonal justice, and the conceptual development of therapeutic values in occupational therapy.
I have contributed to national guidelines and educational resources through The British Association of Clinicians in ME/CFS, RCOT and NHS England. My leadership experience includes a regional clinical fellowship with NHS England, where I supported national workforce strategy and international recruitment initiatives.
I am committed to advancing occupational therapy education through inclusive practice, collaborative scholarship, and strategic engagement with professional communities.
 
Jonathan Edwards said:
I note that the word 'wheelchair' is not found in this document. Nor are 'contracture' or 'feeding'.
The word 'shower' is cited once as an activity that 'enables work'.

The denial of reality is breathtaking.
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To be fair, p. 2 says
A guide to supporting people with severe and very severe ME/CFS has been developed by
BACME and should be the key reference for clinicians working with this group of people. This
current guide is more suitable to people who are less severely affected by ME/CFS.
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but that's easy to miss. And the denial of reality throughout is still stark. (edited to add) There's nothing in the activity management sections saying that if a patient deteriorates, the therapist should switch to using the guide for severe patients. Because they don't think it's possible for a patient to deteriorate under their management?
 
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