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

PS Can the title of this thread be updated to reflect the name change. Thanks.

From the mods: done

 

It is also a very significant, albeit quite subtle, acknowledgement, acceptance and signalling of what the new guideline really means.

 

It will be insightful then to see whether they choose their front page image to be more representative of/appropriate to the illness than what seems to be a silhouette of an active children's playground. I don't expect anything other than something that does not unquestionably push/depict the wrong impression of the illness, and that image or one chosen of a similar 'active lives' type post-guidelines and research developments since it was last updated etc would say a lot

 

100% agree. COme to Jesus moment happens and they haven't blinked an eyelid before or after when being the most close to 'doing the problem treatments under discussion and seeing or for some reason not seeing the impact of that' of anyone. They were the back stop that didn't see or speak up. They've not changed their terms or kicked anyone out, just inclusive based on 'if you worked delivering GET+CBT paradigm you have a voice'. How is that relevant or useful expertise? It's just experience in definitely having had a certain attitude and been happy to do work pushing that isn't it - where's the useful bit?

No reason at all why they couldn't have changed their expectations or sign-up in order to clarify they only contained at least those who claimed they wanted to work in a new way that was compliant and not the old non-compliant? Has anyone left? What is having knowledge in the wrong information not less useful than no knowledge? Have I missed where they offer something good vs people who at least show they actually want to do rather than undermine the new 'job'?

 

I think that is a good summary of my thoughts. I'm not ready to assume credit is due to good things for the name change - although it would be terrible if they had not updated the acronym to account for the change in order of CFS/ME to ME/CFS, does it really say something more than either this being the prompt to find a way to make it still work or it wanting to put the word clinicians in (and what that means).

They have bigger issues I'd need to see tackled, such as their taglines being all about fatigue, and their chair: https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct2021.pdf being someone who works in rehab, developed rehab and clearly has an interest in MUS.

The more the years go on the more I feel the word 'fatigue' needs to be removed from the description and symptom list for ME - for many reasons including it not being an accurate description of what I think most of us actually experience and that being substantially misleading. And that is pretty key given that I think whilst certain research can be trapped in using fatigue scale measures are we really even looking at the illness they claim they are ie validity issues.

And I think PEM should be updated to PESE to make it clear before that one becomes warped as well and release it from any miscontrueing as fatigue. Too many talks of 'hibernation' stuff atm and these things both bias towards not accurate symptoms in how they operate and theories that are loaded and unproven? If we want an open field and interested and curious staff running clinics and writing info that other medics see then using the acronym whilst running 'fatigue-focused' trade association which wants to also treat 'other fatigue conditions' as if there is overlap e.g. with MUS (?) is an issue.

 

My view on the 'fatigue' issue, Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

 

When you compare all this (and the measuring on a subjective fatigue scale, rather than 'how ill are you' and whether PEM/PESE is elicited) to what Physios for ME managed to work out when mapping the same illness in a short space of time... you'd think they were different illnesses. And there is the issue. BACME even when they try and update can't seem to break out of their box/assumptions. Or to try and marry how their still offering 'fatiguing condition' rehab works for a condition that is instead 'energy limited' by coming up with 'dysfunction theories' - which is why the methods end up so strange given what the result needs to be is set and the 'why' has to fit that.

I don't have CFS I was dumped there years ago with it being clear it did not describe the bloodwork etc and the 2007 guidelines being wildly different to my condition, and I don't have the ME BACME talk about, my history and symptoms and reaction to everything does not fit it - indeed I was seeking what it was that I had.

It was only the new post 2017 info from CDC (on pathophysiology so if that is inaccurate then I need to seek what it is that I do have because mine marries that) and then Physios for ME descriptions that I think - well I do have that.

It breaks my heart that the latter have not been put in charge of oversight where anything relevant is involved instead of BACME, and checking anyone who works on that side is appropriate to be there. People on the ground need to be those who do want to update science and be open-minded. They seem to be driven by finding out what the condition is, observation and open to work with medics in back and forth of what is causing this too, wherever the solution might lie. Humility of knowing much might lay beyond their area - completely different attitude to the 'capturing' feel of grouping then writing entire theories to justify what you want to offer.

They cannot have it both ways. BACME who and what on earth do you actually treat, and how many actually have that illness - because from my experience it isn't most people with ME if it is 'fatigue', and so funding for those people should not be going to your services and the name should be dropped. Replace with 'trade org for fatigue professionals' or something. All these medics who need to rewrite via PR twisting of terms and hard sell to third parties that patient testimonies be ignored, insert 'softening words' to make it seem palatable isn't it obvious what you offer and believe does not 'fit'. BACME don't seem keen on changing their 'orientation', just tweaking to make their supply-led sell more acceptably etc?

If medicine operated right this could not be the situation.

 

Would be interesting to see what the critique was.

On a side note I looked up the 'Clark et al (2019)' that is quoted at the very start in italics in the paper on dysfunction in ME that BACME did in Aug 2021 and have on the guidance section of their website.

DO we have a page created on this? I can't find it by plonking in the title or Clark et al, but it seems like there might be a duplicate already on here that I have missed: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433252/

If not, then this is I guess what BACME now believe in enough that they've currently based their new approach on?


I've just been looking up who the James E Clark is - a paper just a year before in 2018 notes that at that point he is 'a psychology graduate at time of writing and now a medical undergraduate': https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1384095

I would assume for the 2019 paper as there are more authors that some of them would be staff - it would be strange surely for BACME to focus their position paper on an undergraduate medical student (with a degree in psychology)'s paper to the point of quoting them at the beginning? I've clicked on the author information and don't know whether the layout of this is unusual (it notes who did which bit etc) as I don't normally click on that etc.

 

Yep. Doesn't feel 'research-led' or 'science-led' (certainly not in the observation sense) or 'guideline led'. More like they feel they have to tick these boxes a little bit.

They'd decided in 2020 position paper that they were going down the 'dysfunction' route, and to offer 'graded exercise' that wasn't 'GET' - all about 'how fixed' the increments are. Their information after this (including releasing a position paper in Aug 2021 on 'dysfunction', which seems to use a quote from a paper done by a psychology grad/undergrad med student Clark 2019 at the front which I find quite strange as a choice) does not provide me with confidence they are looking to 'adapt'.
Now to me the 'fixed' or 'patient-led graded' from them feels like splitting hairs given how 'motivating' (or potentially 'of the mind they know what's best and won't take no for an answer or hear anything said to them') individuals often are in their area - so it is like 'wind them up toys' after a belief has been fed of 'this works' . That pat phrase of 'patient led' only works if you actively intend to make that culture change/people open-minded and aware how patients can't fight or shout back so need to be listened out for and not 'bargained with'.

I don't think I'm over-reading between the lines on the tone and exact semantics/choice of words they used in their annual report Jan 2021:

The following is an extract from BACME constitution section 3:
The relief of sickness for the public benefit by:

3.1 Championing clinically effective practice in treating CFS/ME and other primary fatigue conditions
- Post viral fatigue management guide
- BACME position paper- Dysregulation model
- Collated response to draft NICE ME/CFS guideline
3.2 Disseminating of recent evidence and practice to clinical practitioners
- Peer Supervision & topic based webinars
- Dissemination of BACME position paper
- Newsletters & Communications with BACME members
- Dissemination of NICE response to members
3.3 Providing education and training for members respecting up-to-date evidence and best shared practice
3.4 Advocating for equity of access and excellence in the provision of services
3.5 Facilitating networking amongst clinicians, researchers and patients
3.6 Advocating for and promoting relevant research and to publish all useful results arising from any research supported

Sorry if I'm going into this a bit much but I kind of find the BACME thing all so very strange to work out who they are, why etc too (someone else said it is hard to work them out). And I'm slightly intrigued because there is a Sue Pemberton (not sure whether it is the 'real one' or not) who comments in the Times and has mentioned CBT and anxiety on other articles a few times - yet some e.g. at the ME Association seem to rate her as an example, or certainly did in past years (I don't know whether this is 'relative' to other voices a few years ago/whether she has changed and was less into that or whether I've just read 2 + 2 =5).

 

don't think this has been posted (not sure what changes if any from the previous one)

bacme board members Oct 2021
https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct2021.pdf

 

It is disappointing to see that so many of these people at BACME appear to be oblivious of the change in climate of opinion about quality of care for ME. To have a professional body with people quoting their expertise in methods with no evidence base is not good enough in the light of recent debate.

 

I particularly liked this from Adler's Linked in page

...I have also honed my approach - believing that everyone has the answer inside, sometimes it takes good questioning to uncover the answers and developing a good questioning technique has proved invaluable.
In the summer of 2014 I joined Vitality360 expanding my skills within CFS/ME and persistent pain to now include close working with insurance companies and with a greater emphasis on helping individuals to return to work.

Charlie Adler - Specialist Occupational Therapist - 'Self-Employed' | LinkedIn

 

I know of Vitality360. They treat CFS as a psychological illness.

 

not surprising as the founder is Jessica Bavinton who "was a PACE trial researcher who has been heavily involved in promoting GET for a long time. Vitality 360 seems to do a lot of work with insurance companies".

https://www.s4me.info/threads/action-for-m-e-hosts-dwp-spotlight-training.7539/page-3#post-134847

they have been trying to 'improve their image' and made numerous changes to their website; currently also aimed at LC sufferers.

https://www.vitality360.co.uk/


spot the MBACME members.
https://www.vitality360.co.uk/our-team

 

Believing and having are 2 entirely different things .
If only it were not so ...

 

Unfortunately, no such change in climate. If anything, medicine seems to have reinforced those beliefs, actually able to both assert that most people recover while those who don't fail to recover because of some imaginary thoughts and beliefs. They may ignore the evidence, but they are betting on the horse most likely to win and even in medicine, the winners write the textbook. No matter how it was won. The opposition to doing anything beyond pseudoscience is just too strong.

Popular and wrong? Popular. Unpopular and right? Very unpopular. This is the politics of healthcare and this is what BACME is all about. It's good for their self-interest, bad for us, the choice is easy.