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

[bobbler]

Do we have a copy of the pre 2023 revisions and post revisions to see how much really it was just those 3 /1 in charge of bacme letting everyone else ‘contribute’ but then change it to what they intended it would be anyway

I thought it was weird gregorowski wasn’t listed on the lists. And that no one on the whole of those lists came from a service where they treated or maybe even had met someone with severe or very severe me.

But I see she had a special slot at the end after it all.

Given the having no expertise in severe this lot all bring and the power hierarchy unblinded for editing and who gets final say I assume it’s about making sure the politics of everyone of those listers professional/indidual needs being covered and then bartered out.

Rather than a doc searching to work out what would be patients needs - so the title turns my stomach in its delusion and lie it’s mis-selling, that is gobsmacking to sell weaponising this document to remove agency from this entire group ‘in the name of’ their needs, and yo have the gall to call it ‘for the needs of the severe’ whilst doing that.

Look at the list of kingdoms /businesses dividing the spoils by making sure it fits those missions and business models and their needs on this list.

There is something so disturbingly sinister they went so far to make it that title claiming it was ‘driven by the needs of the severe and very severe’. I find it stomach churning someone believed they had the right to name it that whilst excluding all people in that group from having a voice and of course they would know a single person in that group of their needs because even if they met them they silence them by telling them they aren’t allowed to have free speech or critique even when it’s entirely about the topic of their own body and agency and who they are and their human rights and freedom not to have personality labels impacting them on top of illness.

I find this so abusive that someone wouldn’t spot this and bystanders aren’t stepping in either. To think there are people in this world that even after they’ve been debunked and called out for the harm done to this sane group and that they were wrong. To then have them react in such a way to target them , the most vulnerable due to that harm they caused and not apologise but look to steal their access to a voice again - and for them not to have shame for themselves but entitlement so strong they think they are doing nothing wrong

Well it’s utterly shocking people like this aren’t curbed and patients protected in the first place . But to realise they are allowed to collect up to plot in a group about how they will join together and agree something that will target this vulnerable group , with them not even expecting they would need at least a group of 20 severe and very severe people they give proper time and adjustments to make sure their thoughts and experiences are the starting point for knowledge (instead of the tropes and assumptions these staff have used as starting points without even realising it’s bigotry if it’s come from a stereotype and you never met or listened to an actual person from that group before believing them) in order to make these claims/documents but to just gloss over such issues. How out of date is this world? It just feels legislation and governance hasn’t caught up in this area and it’s getting played.

 

[Hutan]

Just gone for a look and am baffled by the giant hand holding a bunch of fairy lights that presumably aims to represent BACME.

BACME hold the means to enlighten us patients floundering in the dark?

Section 1: Authors and Development Process
The first edition of this document was compiled in 2017 by the severely affected
working group of the British Association for CFS/ME (BACME) with help from the
BACME executive and other contributors, listed in Appendix A. The final version
incorporated feedback provided by BACME Patient and Public Involvement
representatives, GP’s and Allied Health Professionals, also listed in Appendix A.
In 2019 minor revisions were made to the section on autonomic dysfunction to reflect
research developments and web links were updated.
In 2022/2023, this document was revised to be NICE compliant and updated to
reflect clinical and research developments.

Did they have ever even one patient who was actually in the severity group being written about, that the entire policy was about AT ALL in their entire working group? Nevermind if they intimidate and tell them clearly if they dare object of critique even obvious harmful tropes then I’m sure there are threats and grumpiness ‘training them’ they aren’t allowed ‘because they aren’t there for that’.

Can I just check what you are saying about BACME's Guide to severe ME?

That it was made in 2017 at which time it was claimed that there was patient input, and there have been revisions since then with no claim to patient input. But the list of contributors does not seem to include any person with severe ME/CFS (or even any person identified as having any sort of ME/CFS?).

I think for an organisation like BACME, the patient representatives who have significant input on a document should be explicitly named. Not only because it is the respectful thing to do, but also because it helps to ensure accountability.

 

[bobbler]

BACME hold the means to enlighten us patients floundering in the dark?



Can I just check what you are saying about BACME's Guide to severe ME?

That it was made in 2017 at which time it was claimed that there was patient input, and there have been revisions since then with no claim to patient input. But the list of contributors does not seem to include any person with severe ME/CFS (or even any person identified as having any sort of ME/CFS?).

I think for an organisation like BACME, the patient representatives who have significant input on a document should be explicitly named. Not only because it is the respectful thing to do, but also because it helps to ensure accountability.

yes, approximately that. I have doubt on the extent of the original input being sufficient numbers and representative of the population and of those with sufficient experience of being severe/very severe to be 'qualified' (the odd recovered person who was pretty bad once might be acceptable within a group of 20 being listened to, but we should be being consistent with the stats we know).

Plus anyone who has actually properly met and interested in severe/very severe should be explicitly talking about the methods they used to ensure those people had a proper voice, and that the process was adapted so that it was both accessible and not inadvertently coerced - which can be as simply done as doing it in an exhausting way and then being clear about what answers you do and don't like when one is in a position where they have significant power (weaponising mental health powers possible, and all the links to GPs, employers and things people rely on).

30mins into anything where I haven't had significant control to pace out and someone will be able to put words in my mouth, or you end up with a drop-out if you aren't providing the opportunity for people to go away and report back much later when they feel well and able.

I find it astounding that this isn't a required part of anything done these days.


But also when I look at that list of places those on the list work then how many severe/very severe patients have they even met, nevermind had successful ongoing long-term treatment and follow-up with? Given most clinics 'don't deal with severe' because/and all they offered was cbt and get.

Some [non-BACME] GPs will have met more severe ME patients and had longer conversations and study into their health. Potentially those from certain support services (wheelchairs, equipment, home adaptations) might have.

It seems a fair question to ask why they just assumed they were qualified to fill the gap for a population they've I assume most of them never really properly encountered before? And to ask how many have actually met severe and very severe patients, how many, and for how long/how longitudinal follow-up.

Otherwise what additional information and from where do they think they are bringing to the table to write this?

It is one thing being conflicted enough in one's future interests to get round the table based on wanting to have skin in the game, another thing if that hasn't actually meant (because it is a 'new market' for you) you've had no more contact with the population than a fresh pair of eyes who then looks at the Nice analysis of research so far, can understand the biomedical research and is prepared to and able to actually meet/speak to/hear some actual patients?

I guess there is a question of 'what's their original source for any of these lines?' proper primary research done well? old tropes from secondary stuff that has been debunked and sadly was outputting what would/should now be considered tropes (what else is something like suggesting people have false beliefs, or fear-avoidance when they don't)?

 

[Suffolkres]

BACME hold the means to enlighten us patients floundering in the dark?



Can I just check what you are saying about BACME's Guide to severe ME?

That it was made in 2017 at which time it was claimed that there was patient input, and there have been revisions since then with no claim to patient input. But the list of contributors does not seem to include any person with severe ME/CFS (or even any person identified as having any sort of ME/CFS?).

I think for an organisation like BACME, the patient representatives who have significant input on a document should be explicitly named. Not only because it is the respectful thing to do, but also because it helps to ensure accountability.

 

[Suffolkres]

Licorice Allsorts.....?.
Pick & Mix...?

Take your pick. .?

 

[Suffolkres]