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 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.
 
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