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

Trish

Trish

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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.

__________________________

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.
___________________

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
____________________
 
I had forgotten just how bad this is.

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

BACME said:
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.
Click to expand...
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.

BACME said:
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.
Click to expand...

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.
 
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Sasha said:
Maybe this is where our patient-produced factsheets can come into their own. A factsheet on this could even address the role of patient reps in such groups.
Click to expand...
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.
 
Trish said:
Thanks, @InitialConditions. Definitely worth sharing again. Have you submitted it to BACME?
Click to expand...

I didn't. At the time I was part of the CMRC PAG and some of these thoughts made it back to BACME members via feedback we were asked to give on a talk Vikki McKeever and Peter Gladwell gave. Also, Sue Pemberton, who had by then left BACME, messaged me on the subject of my blog, so it made it to her — not sure how.
 
Sasha said:
Sorry, what I meant was that our factsheets could explain how naive patients can be used as reps by BACME to help forward BACME's agenda.
Click to expand...

BACME is a UK specific issue and hopefully the fact sheets will be internationally relevant.

Presumably we could include the issue of being patient reps on groups in general at the same time as discussing things like what research to participate in.

Also it can be unclear in advance if a being a rep on a group would be a force for good or a waste of time, such as Cochrane’s independent advisory group.
 
BACME have recently recruited another carer to this group. I do not know any background to this guy, other than he is the same carer group as Ceri Rutter, their main patient rep.

If anyone was interested, they could contact to ask them if they want more
 
Sasha said:
Sorry, what I meant was that our factsheets could explain how naive patients can be used as reps by BACME to help forward BACME's agenda.
Click to expand...
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.

Peter Trewhitt said:
Also it can be unclear in advance if a being a rep on a group would be a force for good or a waste of time, such as Cochrane’s independent advisory group.
Click to expand...
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.
 
Peter Trewhitt said:
BACME is a UK specific issue and hopefully the fact sheets will be internationally relevant.
Click to expand...

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,
 
Trish said:
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.
Click to expand...
I find them beyond terrifying

their behaviour in inveigling charities etc with what seems like with veiled threats to work with them then it being thoroughly one-way as predicted has underlined their agenda - it’s not about anything good or the patients or understanding the condition.

I find it gross they have been allowed to name themselves experts - instead of the problem that needs to be deprogrammed then reprogrammed with proper education - for me/cfs, when at best those 130 people just worked ‘at’ those who got shoved to cfs clinics and often harmed them. Not the expertise I assume most would call useful and to be ‘rolled out’ and particularly not in line with a guideline, science or human ethics

I feel so broken that these problem children snd their wants, and what they want to do as a job and power they want to assume over others with no right or qualifications for have been what this has ended up being suffocated by vs patients getting to live and the fact it’s an illness that if we got rid of this crap abuse and it was better understood many of us could have been so productive instead of spending our lives being undermined and our health destroyed for the sake of pathetic obsessions of others eg ‘if we can’t do that extra 10% then destroy us trying’

it’s disability bigotry and all the tactics with silencing top of the list writ large
 
Sasha said:
Sorry, what I meant was that our factsheets could explain how naive patients can be used as reps by BACME to help forward BACME's agenda.
Click to expand...
I think this is an issue - along with other common manipulation and tactics does need to be tackled somehow

they use pwme particularly newbies like a playground for coercion whether they realise they are coercing or not (that’s been built into them by their training in dodgy belief systems they now can’t drop but also aggressive communication techniques they’ve had embedded into them)

because they do such a good job of crocodile smile where newbies are isolated and made to feel undeserving whilst at the same time being told ‘if you behave’ then ‘we will put up with you’ and the using Pat on head vs disapproval to steer people away from support and become totally gaslighted. It’s the worst psychological abusive situation that’s been created yet gets approved and we all walk into it and are trapped unable to feel safe in tgat nightmare with all the exit doors hidden

so of course people end up ticking the boxes that let them live another day and maybe not lose everything, say what’s required etc. they have no choice

I don’t know whether it’s just a fact sheet though to cover this - their social pressure (yuk faces when we mention certain things etc) is so absolute that uncovering such stuff without it getting DARVOd (and the tired calling those pointing out what they do ‘conspiracy theorists’ - which gets right up my nose when it’s those who do it that are sitting round plotting and overthinking) probably needs more behind it than just a few lines in a fact sheet

I struggle to see how keeping old staff like this not just in place to ‘own us’ by taking funding for me/cfs but even be allowed to not be deprogrammed and ‘debadged’ (to me their claims are propaganda because it is pushing an old fictional belief system as rumours about people with s serious illness onto other staff who at least might want to learn the facts) to move into any position which is in health or care/has responsibilities that could indirectly influence how we are treated where they can indirectly claim expertise to influence the lot of pwme after the facts came out of what me/cfs is sbd the harm this old tyranny did

but just acting bold and bolshy seems to have been allowed to work by anyone who is supposed to have held the line for us - amazing how effective such tantrums and touchiness when wrong can be.
 
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It is quite interesting to read this as a definitive exercise in BACME nailing their colours (i.e. signal flags) to the mast.

If you look up in the flag book you will be able to decipher these colours clearly:




b.gif

B


u.gif


U


l.gif

L


l.gif

L again


s.gif

S


h.gif

H


i.gif

I


t.gif

T

S4ME is here to tell it like it is. No hiding places for flannellers.
 
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