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

Still wolves in wolves' clothing.

They're simply pretending to adhere to the NICE guidelines, while ignoring them entirely. And showing complete inability to learn from experience. It's actually shocking how obstinate they are to hold on to their failed models.
 
bobbler said:
I'm genuinely really worried that we are 2yrs in and this has been produced by people who might be allowed to not only continue in roles but now be around those who are at this level and 'speaking for' the condition.
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Yep. Don't want to be that guy, but I have yet to see any fundamental changes in the UK for patients, at any level.

Thus far it looks like nothing more than a PR job to hang onto their empires and incomes.

These people really have no shame or remorse. They just don't care.
 
Sean said:
Yep. Don't want to be that guy, but I have yet to see any fundamental changes in the UK for patients, at any level.

Thus far it looks like nothing more than a PR job to hang onto their empires and incomes.

These people really have no shame or remorse. They just don't care.
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Behaviourists gonna do loopy behaviourist stuff (with fake models justified by ‘they will be updated based on on the ground observations’ going into a hierarchy where they are treated as rigid back-covering ‘must follow’ and fake stories that are plain nasty often made up to pretend they make sense)


The issue is it shouldn’t be the old-school staff voices at all. This area that those are particularly caught up in and attracted to just don’t change their spots unless made to and overseen to check they stick to it. Partly because they believe in a general ‘theme’ and that’s the type of thing they want to do with their days not be supportive and curious. They are used to having a stringent model that does what they 'do' and not something which is about hearing from each individual and 'seeking to understand' a condition looking at how they can help by them doing. It's like the mis-thinking of those who think now that for all if someone needs help then hear that as 'they just need coaching to do it themselves' and switch off to what is really being communicated. Which has the apalling added effect (as well as the need being not just unmet but made worse) of making someone's voice not exist which is horrific. THese are intelligent pwme on whom they should be basing their learning, not the other way around.


Ie certain staff types and their ideology don't and I’d say ‘can’t’ or ‘won’t’ fit with this being medical and treating as a supportive person in a genuinely supportive model rather than rigid behavioural ‘pushing’ pretending it’s ’to Help’ . Because it is based in the idea 'there is something wrong that needs to be changed in the person' and not 'oh gosh we need to see this as a straightforward 'it is what it is issue' (and I think some people eventually lose the ability to be straightforward and hear if they learn to ignore for long enough). It's only 'help' if you have checked and developed it based on it being such and you shouldn't be turning to made up narratives for that. In fact doing so feels like denial.

the mad bit is the making up stories part they’ve actually said they’ve done ‘yo square the circle in their heads’
 
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Hutan said:
I think they care, but they seem fundamentally incapable of accepting that nothing they do is actually going to fix the patient.
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I’m trying to get the term right and the closest I’ve come is callous disregard or callous indifference so far. Maybe there is no intention to harm by throwing patients into a dystopia with made up stories about who they are and nasty little bullying models. But there is a willful ignorance to not check that the consequences don’t do said harm to the extent when someone exhibits signs of harm they ‘won’t see it’ ie refuse or come up with stories or disparagement targeting the the man(not ball) and embedding harm further.

And yes the word callous because choosing not to check if it has side effects or harms, whilst you claim your reason for doing it is 'help' well that really is the correct word because it equates to not caring about the impact or outcome of your input.

incredibly many of these aren’t from a psychology background - it’s behaviourism but without the requirement that they had to study the different areas their flaws and drawbacks and the situational likelihood of harm ie ‘don’t create a situation that does more harm than you claim to help’ .

It might be actually interesting to blueprint/model out what the behaviour of these people is actually putting any ‘patient’ (or any norm who walked in the door as a subject) into - in the absence of empathy actually diagramming out the common sense of what they are doing feels needed.
 
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Sly Saint said:
section I find most troublesome
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It’s all just not needed and someone at best inserting superfluous stuff they fancy doing as their job claiming it's help without checking it’s not a horrific harm they are doing. And given there is enough information out there about how harmful and suffocating all this is there is no excuse to do this to another human being under the excuse to yourself just to gain fir yourself money/power/whatever comes with said job/role.

They can manual it out all they want but as soon as it was confirmed it is not a psychological cause or driven all this ‘there is a behavioural cause we must train people’ which sadly is also doing the wrong thing with what it’s training in [and not being aware that behavioural stuff in itself has a suffocating and potentially traumatic impact] - the sleep stuff is soooooo harmful long term as well as short - it’s immoral.
 
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Hutan said:
I think they care, but they seem fundamentally incapable of accepting that nothing they do is actually going to fix the patient.
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Their track record of bad faith, especially post-NICE & with Cochrane, is too persistent and stark and damaging for me to give them any more benefit of the doubt.

They have made it abundantly clear that they think they own us, and nobody, least of all us, have any right to say otherwise.

Far as I am concerned, the situation with the psychosomatic cabal is now so bad that it must be removed from any influence over clinical practice or government policy, and any further research efforts from them must closely supervised by responsible adults from outside of the cabal.
 
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Sean said:
Their track record of bad faith, especially post-NICE & with Cochrane, is too persistent and stark and damaging for me to give them any more benefit of the doubt.
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In relation to BACME, who are more likely to be clinicians working with face to face patients, rather than the great and the good of research and service planning who have repeatedly failed ample opportunities to address the research issues, I suspect the idea that rehabilitation necessarily involves identifying the level of current optimal functioning then trying to push beyond it in suitably sized small increments is so deeply ingrained that it is intellectually very difficult to move beyond.

It is fair to ask why they don’t notice that for a large percentage or even a majority, this doesn’t work or indeed makes their patients worse. I suspect there are reasons it is not as obvious to the clinicians than you might think: people are not going to complain to nice caring therapists who are obviously working hard and trying their best; the clinicians tend to provide input in relatively short fixed term blocks missing medium and long term fall out; patients desperately want to get better and in the short term a keen to believe things are getting better; when undertaking rehab the patients may drastically cut back on other activities supported by work, carers or family, only falling back once intervention is over and real life hits; most UK clinics only see mild and moderate patients so their clinicians have no idea what severe ME actually looks like; those patients that experience dramatic sudden long term deterioration as a result of intervention, drop out and are never seen by the clinicians again; clinicians are prone to toxic positivity, indeed it is part of their role to create a supportive positive environment, but this means they focus on apparent success but fail to recognise long term deterioration is also possible (a false belief that improvement arises because of intervention, but deterioration comes from the condition or the patient).

Getting beyond this idea of improvement necessarily arises from appropriate increments in activity from an appropriate base line is deeply ingrained, as a former Speech & Language Therapist, it took me at least a decade of ME to understand that this does not apply to my condition. I think I was aware as a clinician that much of what I did was based on untested assumptions but I tried at least to make those assumptions explicit. It is inexcusable that [BACME] are however still making these assumptions, and have failed to recognise after decades of collective experience that ME is different, however I suspect it is not arising from maliciousness but rather intellectual failure.

[edited to correct spelling]
 
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I think their biggest failure of process is not really listening to patients actual experiences and relying on questionnaires at the end of a short course of 'therapy' to assess the effectiveness of their service. People are naturally grateful to have a treatment, and often don't realise until much later how useless it was.

And the initial stage of getting people to cut back to a baseline level of activity is helpful, so leaves patients believing therapists know what they are doing, and expressing gratitute and hope. I think you have to live with and/or keep in touch with people with ME over longer periods to see just how useless and in many cases harmful their rehab, pacing-up approach is.
 
Peter Trewhitt said:
however I suspect it is not arising from maliciousness but rather intellectual failure.
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The difference in outcomes are largely indistinguishable for the patient.

At some point the persistent failure becomes wilful, they start choosing to not see the problem(s). We are at the stage where anybody claiming to be a qualified professional in this area cannot plead ignorance of the issues and history of it.

There are no excuses for not doing their due diligence. There never were, of course. But there sure as shit are not now.
 
The BACME document states

"BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services"

Does anyone know what that project is and whether any UK patient organizations are involved?
 
Medfeb said:
The BACME document states

"BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services"

Does anyone know what that project is and whether any UK patient organizations are involved?
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I think BACME have a patient group
 
BACME 2024 Conference
MAY 16 @ 9:00 AM - 5:00 PM
£75.00 – £95.00
We are delighted to announce the BACME virtual clinical professional conference “Delivering NICEly ME/CFS” which will be delivered on Thursday 16th May 2024 via Zoom. The conference will run from 9:00 am through to 5:00 pm.

https://bacme.info/event/bacme-2024-conference/

BOOKING IS NOW OPEN
  • This year’s conference will focus on the most recent NICE guideline for ME/CFS, delivery of services to ensure high quality and most appropriate care for all living with ME/CFS, and related topics.
  • The conference is open to clinical professionals working with people with ME/CFS and primary fatigue conditions including Long Covid.
  • The day will provide a mix of lectures, innovation presentations and workshops with networking opportunities over lunch.
  • Our key-note speaker is Dr Alan Stewart MRCP SAS Doctor Sussex NHS ME Service
  • We have representatives from the Department of Health and Social Care bringing us up to date on the ME/CFS delivery plan.
  • To build on the great feedback from attendees at the 2022 conference, this year’s conference will include more interactivity, more screen breaks, and a wider choice of subjects.
  • Our Patient and Public Involvement work stream have incorporated the patient voice throughout the conference, with thought provoking and innovative music and video presentations.
Will you be attending virtually @Joan Crawford
 
Trish said:
He's one of the many medical advisors to the Sussex group led by Colin Barton that has a disproportionate number of medical advisors for a local group, all proponents of the BPS approach.
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and who also opposed the new guidelines, so it seems at odds that he should be their main speaker at a conference “Delivering NICEly ME/CFS”.
 
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