United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

[MrMagoo]

I’ve just noticed the last paragraph of this:

“BACME is a charity that represents clinicians, specialist ME/CFS services and people living with ME/CFS ….. and calls on..”

I don’t know what technically falls under the term clinician

or if all me/cfs specialists or specialist services either agree with the specific stance or are represented by or agree with BACME

but I do have an issue with them using terms like expert in or specialist in when they then use the terms like me/cfs and would be required to understand the spirit and letter of the new guideline and be up to date and understand methodological issues for research (eg that pace can’t be cited and why and a lot of old research and even recent research using those old issues needs to be junked as not applicable and of such poor quality it shouldn’t have a voice as acts as propaganda by its presence vs accruacrly etc) but both those terms of expert or experience or specialist had been gained on old ideas that harmed and old assumptions- they haven’t been through reprogramming of those

as for representing people living with me/cfs… I think we need to discuss that here because I don’t think any of their set up shows they can say that as they don’t have an uncoercive approach (yes their communication involves coercion by reacting extremely aggressively even with threats of ‘if you criticise we will paint it as troublesome patients’ but also those in clinics have their entire survival and life held hostage by the risk of bad notes suggesting psych stories or non compliance and they’ve demonstrated that not saying the right thing is taken as ‘saying the wrong thing’ and so on) that involves listening to anywhere near a representative and not cherrypicked niche of those living with me/cfs .

I just don’t think their position of power of their staff that they shouldn’t have had meant they can be representative. And to be near saying that would require very independent oversight of a very much larger and more representative of those with experience (you can’t ask people before harm hits or whilst they are still vulnerable as they are in their system) being not just consulted but those actions and inputs actually being heard and followed?

Their own pages clearly state that they are an organisation of clinicians working in ME/CFS


so are they representing us even though we wouldn’t be allowed to join as we’re not clinicians or working in ME/CFS?????

 

[Peter T]

so are they representing us even though we wouldn’t be allowed to join as we’re not clinicians or working in ME/CFS?????

I wonder if they can meaningfully be said to represent people with ME/CFS given they very much limit any patient participation in the organisation. However I guess they could claim to advocate for us, as it is possible to advocate for some one without their consent or agreement. However their channel of communication is largely with their own current patients who are not representative of people with ME/CFS as a whole, this very much excludes the severer end of the spectrum. It may be, though I don’t know if there is data on this, also that their patient constituency are relatively early on in the course of their condition meaning they do not see people who are decades into the condition.

Under the UK Parliamentary system our constituency MPs are considered to represent us even if we did not vote for them or if we are members of a different political party. So the MP has obligations towards everyone in their constituency. However the constituency of ME/CFS services is not everyone with ME/CFS but rather just those referred to their services. Certainly there are very limited channels of communication with people not receiving their services. MPs are expected to respond to all communications from their constituents and hold regular open surgeries, but I suspect BACME members would not necessarily take kindly to non patients requesting action or support. There are some links between the specialist services and local patient groups and between BACME and national charities but this is sporadic and very much on the clinicians terms.

 

[Kitty]

so are they representing us even though we wouldn’t be allowed to join as we’re not clinicians or working in ME/CFS?????

Yup. @Peter Trewhitt makes a good point about advocacy not always having to include patients; hospital specialists probably do this, but most BACME members are not hospital specialists.

They're an assortment of clinicians who know almost nothing because there's almost nothing to know yet. They're trying to manage patients on that basis, which is all well and good as long as they don't start assuming or pretending they do know.

But (a) we have no way to be sure about that because we're excluded, and (b) we are the equivalent of the hospital specialists, not them. So of course we have suspicions, why would you exclude the experts?

 

[InitialConditions]

I’ve just noticed the last paragraph of this:

“BACME is a charity that represents clinicians, specialist ME/CFS services and people living with ME/CFS ….. and calls on..”

I don’t know what technically falls under the term clinician

or if all me/cfs specialists or specialist services either agree with the specific stance or are represented by or agree with BACME

but I do have an issue with them using terms like expert in or specialist in when they then use the terms like me/cfs and would be required to understand the spirit and letter of the new guideline and be up to date and understand methodological issues for research (eg that pace can’t be cited and why and a lot of old research and even recent research using those old issues needs to be junked as not applicable and of such poor quality it shouldn’t have a voice as acts as propaganda by its presence vs accruacrly etc) but both those terms of expert or experience or specialist had been gained on old ideas that harmed and old assumptions- they haven’t been through reprogramming of those

as for representing people living with me/cfs… I think we need to discuss that here because I don’t think any of their set up shows they can say that as they don’t have an uncoercive approach (yes their communication involves coercion by reacting extremely aggressively even with threats of ‘if you criticise we will paint it as troublesome patients’ but also those in clinics have their entire survival and life held hostage by the risk of bad notes suggesting psych stories or non compliance and they’ve demonstrated that not saying the right thing is taken as ‘saying the wrong thing’ and so on) that involves listening to anywhere near a representative and not cherrypicked niche of those living with me/cfs .

I just don’t think their position of power of their staff that they shouldn’t have had meant they can be representative. And to be near saying that would require very independent oversight of a very much larger and more representative of those with experience (you can’t ask people before harm hits or whilst they are still vulnerable as they are in their system) being not just consulted but those actions and inputs actually being heard and followed?

They have always as far as I know represented the staff working in the specialist NHS clinics. I'm sure you can join if you work outside the NHS, but it's very much revolves around the NHS clinics. I don't know what percentage of NHS staff in these clinics are members of BACME.

 

[Peter T]

They have always as far as I know represented the staff working in the specialist NHS clinics. I'm sure you can join if you work outside the NHS, but it's very much revolves around the NHS clinics. I don't know what percentage of NHS staff in these clinics are members of BACME.

I assume participation in BACME would be considered part of the work role of staff working in the NHS specialist services, indeed it is likely to be included in many of their job descriptions either directly or indirectly.

 

[Trish]

I would assume the therapists main allegiance would be to their professional body, eg the Royal College of Nursing or the equivalent for physios, OT's and psych therapists. That would be required for things like insurance, act as their union etc.

I think BACME is just a self important club for therapists in ME/CFS clinics to hold closed meetings and write documents pretending they know what they are talking about.

 

[JellyBabyKid]

I would assume the therapists main allegiance would be to their professional body, eg the Royal College of Nursing or the equivalent for physios, OT's and psych therapists. That would be required for things like insurance, act as their union etc.about.

Interestingly, when I saw my local clinic for a previous referral eight years ago, I told them about Physios for ME and suggested they might want to contact them. I got the response that they were "already members of BACME".

write documents pretending they know what they are talking about.

I have been re-referred to the clinic, following my local long covid clinic being defunded, and have been watching and reading the clinic's "Foundation" course, in preparation for my upcoming appointment.

They also signpost to the resources section of BACME's website, so I have downloaded and been reading all of their documents.

I have questions...

 

[Peter T]

I would assume the therapists main allegiance would be to their professional body, eg the Royal College of Nursing or the equivalent for physios, OT's and psych therapists. That would be required for things like insurance, act as their union etc.

I think BACME is just a self important club for therapists in ME/CFS clinics to hold closed meetings and write documents pretending they know what they are talking about.

The professional bodies require individual clinicians to remain up to date via continuing education but would not specify details. Participation in BACME would be seen as part of continuing professional development, but an individual’s employer would agree that specifics and authorise time involved and cover such as travel expenses.

Such groups as BACME are seen as a way of nationally coordinating clinical knowledge and development between specialist clinicians. More successful groups may develop explicit relationships or roles with such as the NHS as a national organisation, but as Trish says they are not overseen in any way and are largely self appointed. Such groups tend to operate independently of professional bodies as their membership is likely to span a number of different professions.

When I was still working, the national group I participated included SALTs, Physios, OTs, engineers, medical physicists, etc representing communication aids services.

Such groups vary very much given they are dependent on who steps forward to be actively involved and the amount of support their employing authorities are willing to give.

 

[Jonathan Edwards]

Such groups as BACME are seen as a way of nationally coordinating clinical knowledge and development between specialist clinicians.

I actually think that BACME is a pretty anomalous organisation. Professional groups have recognised organisations that either catlike trade unions (BMA) or educational standards systems (Colleges, Specialist Societies etc.). BACME seems to be an independent organisations up to perpetuate certain treatment approaches by those who wish to do so. I don't see any real role either as a union or as an educational standards authority. Very few such organisations are dedicated to a single illness or just one sort of treatment (therapist-delivered).

Words mean all sorts of things in different contexts but I don't see any justification for BACME's statement that they represent people living with ME/CFS in reality. Especially when interested patients have been refused the option to attend meetings.

 

[Peter T]

Such groups as BACME tend to arise when relevant specialist clinical services are relatively new and largely therapist rather than medically managed. Generally there is no obvious medical specialism or specific professional body involved with such services.

There can potentially be a valuable role for such groups, but given the UK ME/CFS specialist services were generally not set up to meet the needs of a clinical group, they were specifically set up to provide GET and/or CBT so they never attempted to examine the needs of the clinical group as a whole. Which unfortunately has distorted their perspective and agenda.

BACME has never asked what sort of services do people with ME/CFS need, what can we do that will help them, rather their reasons d’être is to provide rehabilitation via behavioural and psychological intervention.

[did my usual post, then go on editing without realising I have already posted]

 

[MrMagoo]

I think they said they have Board Members with ME = lived experience.
But the MEA has the same and look how Neil Riley turned out!

 

[rvallee]

Their own pages clearly state that they are an organisation of clinicians working in ME/CFS
View attachment 25507

so are they representing us even though we wouldn’t be allowed to join as we’re not clinicians or working in ME/CFS?????

They don't represent us in any capacity. They're more like lobbyists who corrupt our elected representatives, so the opposite of representing us. They work against us for their self-benefit and nothing else.

Don't know why they put that in there other than it looks good for them but it's frankly offensive and they should take that out. But they won't, because the scam is the business and the business is a scam.

 

[bobbler]

Such groups as BACME tend to arise when relevant specialist clinical services are relatively new and largely therapist rather than medically managed. Generally there is no obvious medical specialism or specific professional body involved with such services.

There can potentially be a valuable role for such groups, but given the UK ME/CFS specialist services were generally not set up to meet the needs of a clinical group, they were specifically set up to provide GET and/or CBT so they never attempted to examine the needs of the clinical group as a whole. Which unfortunately has distorted their perspective and agenda.

BACME has never asked what sort of services do people with ME/CFS need, what can we do that will help them, rather their reasons d’être is to provide rehabilitation via behavioural and psychological intervention.

[did my usual post, then go on editing without realising I have already posted]

This

 

[Sean]

BACME have made it crystal clear over the years that they do not represent me or my interests as a patient in any useful legitimate way. The 'reforms' they have made are empty performative gestures designed to do nothing but cover up their appalling track record, in order to continue on imposing the same basic psycho-behavioural rehab crap they have been imposing on us for years.

I appreciate that they have come out strongly against Cochrane's behaviour. But as far as I am concerned it is the only useful thing they have ever done for us, is way too little way too late, and makes little difference to the sum of their malign influence over the years.

The only useful thing they could do for us is to withdraw all their recommendations, shut down, and never stick their noses into our lives ever again.

If any BACME people reading this are shocked at those sentiments, then I suggest you stop reaching for shitty excuses about why I could not possibly be correct, and start considering that it may actually be the brutal reality of your interference with our lives.