BACME position paper on the management of ME/CFS, 2020, updated 2022 - discussion thread

BACME

Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) October 2020, updated 2022

https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf

We have probably discussed this before. I want to raise it for discussion because we will soon get the government's delivery plan, and because it seems both AfME and the MEA are increasingly working with and being influenced by BACME.

I am going to copy the document here in full to make it easy to quote and discuss. It's only 1 A4 page long.

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Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

ME/CFS is a serious and complex chronic multi system illness that can profoundly affect the lives of people who develop it.

BACME fully supports research into the biological causes and mechanisms of the illness.

There is evolving evidence to indicate a dysregulation of multiple dynamic physiological systems in explaining the symptom picture seen in ME/CFS. Research has demonstrated changes in Immune System responses, Autonomic Nervous System function, Neuroendocrine pathways including the Hypothalamus-Pituitary-Adrenal axis along with cellular metabolic changes.

BACME supports clinicians to underpin rehabilitative and therapeutic processes with a grounding in dysregulation principles.

BACME does not support the deconditioning model of ME/CFS as a primary cause for the condition. It is recognised that deconditioning may be, for some, an additional complicating factor of living with any disabling chronic health condition.

BACME believes that patients should have access to the best available clinically effective treatments, therapy and support with rehabilitation to relieve, reduce and manage symptoms where possible. This will allow patients to make informed choices as to how to manage the impact of ME/CFS on their quality of life and optimise the potential for recovery.

The World Health Organisation defines Rehabilitation as a “process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and selfdetermination. Rehabilitation is concerned not only with physical recovery, but also with psychological and social recovery and reintegration (or integration) of the person into the community.”

BACME supports the delivery of flexible, person specific programmes that take into account the underlying biological processes.

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.

BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS. BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.

Rehabilitation is to be appropriately tailored to an individual’s needs and personal goals and provided within a holistic model. A flexible framework of monitoring and review is recommended and is best achieved by providing continuity of care.

We support the continuing development of specialist multi-disciplinary ME/CFS services and specialist clinicians to guide, support and advise patients towards optimal health, wellbeing, and recovery. This is a complex illness but given prompt specialised intervention we expect improved quality of life, understanding of living with the illness, and progress for each patient.
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Anna Gregorowski BACME Chair Consultant Nurse UCLH

Christine Oliver BACME Deputy Chair and Treasurer East Midlands Network Coordinator

Dr Vikki McKeever BACME Communications Officer GPwSI ME/CFS Leeds and York

Ceri Rutter BACME PPI Lead, Patient/Carer representative, Chair Plymouth and District ME/CFS Group

Kirsty Northcott BACME Education and Training Lead, Lead/Senior OT Torbay and S Devon

Deb Roberts BACME Secretary and Research Lead, Nursing Academic Liverpool

Charlie Adler BACME board member OT Dorset

Peter Gladwell BACME board member, Specialist Physiotherapist/Team Leader Bristol

Rhonda Knight BACME board member Patient representative North Bristol NHS Trust

Les Parry BACME board member Patient representative Liverpool

Michelle Selby BACME board member OT Dorset

Dr Jayne Woodcock BACME board member Clinical Psychologist
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I had forgotten just how bad this is.

They have a whole artcle on their dysreguation model which as far as I can see tells us nothing. It's basically here are some physiological systems, each with a pretty diagram, and a list of symptoms that arise from dysreguation of that system.

I find it interesting that this was published just a month before the draft NICE guideline came out, so they clearly had inside information on what it included, so have gone heavy on showing how clued up they are by not recommending GET with fixed increments, as defined by NICE, and not using the decoditioning model, but making up another one instead.

So here we have in their own words that they do support GET, just their version where they magically know just how much more activity a pwME can do because they are the experts. It's pacing up writ large, and claims it causes improvement. Again, carefully avoiding mentioning the word 'cure' because the NICE guideline forbids it.

The whole thing makes me feel sick. And 2 of the authors, Michelle Selby and Charlie Adler (who is an NLP practitioner as well as an OT), run my local ME service.

 

With great difficulty, especially as they have patient reps on the author group, so can say they have listened to patients. And it pretends to be NICE compliant.

 

Thanks, @InitialConditions. Definitely worth sharing again. Have you submitted it to BACME?

 

I think all we need to tell patient reps and those appointing them is to join the forum.

Once we have a set of factsheets and articles that should be a good resource to point researchers and patient reps towards.

 

I'm not sure a factsheet would be the right way to convey that message. Maybe an article from someone with experience describing how patients can be useful as patient reps, and the pitfalls and need to be well informed.

I think it's largely about whether the group, be it BACME or Cochrane, is actually interested in making changes based on pwME's exprience, or are looking for inexperieced patients or ones with a shared view to give them credibility. In Cochrane's case they set up the IAG, then didn't listen to or consult them at all.

 

Whilst BACME are british I assume there will be similar problems in different countries of those who work in clinics forming groups and they don't quite know what to do and push arbitrary theories. So fact sheets that stick to the evidence etc should be useful in many places,

 

Thanks. So it looks like we discussed it in 2020 before the NICE guideline, and haven't discussed the 2022 update.