An Open Letter to BACME re ME/CFS Guide to Therapy 2025

Our thread on the HERITAGE study
Sasha

Thread 'The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)'

Just stumbled across a mention of this HERITAGE study in David Tuller's interview with Charles Shepherd on the UK government's Delivery Plan for ME/CFS, and we don't seem to have a thread for it. This government website says:

In addition to increasing support for ME/CFS researchers to submit successful applications to MRC and NIHR, we are pleased to announce 2 new research investments and a new funding call relevant for ME/CFS research:​
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Research to improve health and care services. The NIHR HSDR programme has funded a £1.4 million HERITAGE study, which will look at...​
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and on the IPIC Society
Dolphin

Thread 'UK: The Clinical Post COVID Society'

https://journals.sagepub.com/doi/full/10.1177/27536351241231351

Open access
Editorial
First published online February 9, 2024

A New Professional Society for Post-COVID Condition and Other Post-Viral Conditions
Manoj Sivan M.Sivan@leeds.ac.uk and Melissa Heightman
https://doi.org/10.1177/27536351241231351

A new professional society for clinicians working in post-COVID condition (Clinical Post-COVID Society) has been set up to provide a professional network to help advance this field of medicine (www.clinicalpcs.org.uk). Post-COVID condition...
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Jonathan Edwards said:
I had a response from Dr Sivan:

Dear Jonathan
Thank you for copying me in. I will read the BACME guide and your letter in further detail soon.
But thought I would drop a quick note now that you have hit the nail on the head when you say "The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS"

Even after such a big pandemic and 2 million Long COVID sufferers and NHS England spending >300 million on Long COVID clinics, we are back to square one now, with clinics closing rapidly and clinicians and researchers disappearing from the scene due to lack of support and funding for clinical work and research. Not to mention the stigma that goes with conditions without a biomarker.
The field and strategy seem fragmented with a lack of a unified vision (and this includes the charities, given we have so many).

We did our best to set up the Post-Infection Conditions Professional Society (under the BSPRM banner) for clinicians and researchers with the help of NHS England during the pandemic
https://www.ipicsociety.org.uk/

Perhaps if we all support this society, we could have a specialist medical home (Physical and Rehabilitation Medicine) with a research base, as it happens in many countries outside the UK.
Re.template for ME/CFS clinics, I will welcome you all to support the NIHR-funded HERITAGE study, which aims to develop a National Service Framework for these conditions
https://fundingawards.nihr.ac.uk/award/NIHR174857

Would it be a good idea for all of us to meet to develop a unified strategy, which, as you say, is sorely missing?

Thanks
Manoj
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I am surprised he's so positive about the letter, given that a lot of what you criticise is very similar to the Leeds Long Covid service he runs, and the stuff in their
Long Covid rehabilitation booklet - Information for patients.
I hope the 3 of you can get involved in the HERITAGE study he's leading. I fear otherwise it will just rubber stamp the outpatient rehab approach.
 
Jonathan Edwards said:
I had not heard of Bridges self-management.
I worry that all the politically correct talk is drowning out any reliable evidence related content.
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Bridges self-management https://www.bridgesselfmanagement.org.uk/about/underpinning-theory/

Bridges is underpinned by Albert Bandura’s Social Cognitive Theory and his key construct of self-efficacy, which helps to explain the relationship between a social environment, the person and their behaviour.
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When people’s self-efficacy is low, they can start to feel out of control, helpless, and hopeless. By using specific language and strategies, Bridges trained practitioners look for opportunities to build and strengthen self-efficacy, in other words in ‘an individual’s belief in their own capability’. As self-efficacy rises so do the feelings of being able to cope with setbacks and navigate problems increase and ultimately people can start to feel more in control.

As we’ve discovered in one of our recent studies in people with long Covid, working in this way, and supporting people to feel more confident, skilful and knowledgeable about managing day to day, is not a cure but can have a significant impact on self-efficacy, quality of life and emotional wellbeing.
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The reference for 'one of our recent studies in people with long Covid' is this: https://www.bridgesselfmanagement.org.uk/research/research-projects/listen/

S4ME thread here. (We were underwhelmed.) https://www.s4me.info/threads/effec...ng-covid-listen-trial-2025-jones-et-al.42450/

I'm sure it'll make a lovely heartwarming presentation at the conference though...
 
When people’s self-efficacy is low, they can start to feel out of control, helpless, and hopeless. By using specific language and strategies, Bridges trained practitioners look for opportunities to build and strengthen self-efficacy, in other words in ‘an individual’s belief in their own capability’. As self-efficacy rises so do the feelings of being able to cope with setbacks and navigate problems increase and ultimately people can start to feel more in control.

As we’ve discovered in one of our recent studies in people with long Covid, working in this way, and supporting people to feel more confident, skilful and knowledgeable about managing day to day, is not a cure but can have a significant impact on self-efficacy, quality of life and emotional wellbeing.
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This is all well and good for your mild person who has to adjust to living with chronic illness but how does it help people like me who are housebound or bedbound and dependant on care because of medical negligence? I don't want someone to boost my confidence, I want someone to research what the f-k is wrong with me and whether there's a way to fix it. And I also want an apology and compensation for what happened to me at the hands of doctors.
 
Nightsong said:
This is really good. I suppose a substantive response from BACME would be too much to hope for, but it puts others (including the ME charities collaborating with BACME and the DHSC representatives working on the delivery plan) on notice as to how flimsily evidenced their "dysregulation" nonsense actually is, & how little support there is for their meddlesome therapping.
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I doubt that anyone involved in this in any capacity is under any illusion that this is anything but a new label on the same old bottle of vinegar. What does matter is professionals actually saying so and putting them on defence. Not that defending this even matters, the perks of total domination and all that.
 
Dr Sivan said:
NHS England spending >300 million on Long COVID clinics
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Perhaps if we all support this society, we could have a specialist medical home (Physical and Rehabilitation Medicine)
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That is where most of the money has been wasted for decades. This is exactly what the useless LC clinics are built on, and it was a scandalous waste of resources. Good grief, we need people who want to actually help based on what we need, not to offer what they can do regardless of what we need. This is exactly what we don't need and all that's ever been on offer.
 
I have had my head full trying to get the letter off and also writing a brilliant new theory of water on the brain this week. Tomorrow I hope to have time to write back to Dr Sivan. I shall make it clear that the ME/CFS community and I do not see rehabilitation as relevant to the illness.
 
This is great and much needed! I hope at least the associations pay some attention to the arguments. Thank you for the effort!
Jonathan Edwards said:
Although some symptoms are attributable to autonomic activity (e.g. tachycardia) objective evidence for autonomic malfunction was not confirmed (Kemp et al., 2019).
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What would «objective evidence of autonomic malfunction» have looked like in that study?
 
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