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

bobbler said:
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.
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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.
 
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Sasha said:
Just gone for a look and am baffled by the giant hand holding a bunch of fairy lights that presumably aims to represent BACME.
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BACME hold the means to enlighten us patients floundering in the dark?

Suffolkres said:
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.
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bobbler said:
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’.
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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.
 
Hutan said:
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.
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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)?
 
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Hutan said:
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.
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Subject: BACME statement regarding DecodeME

Source: The British Association of Clinicians in ME/CFS (BACME)
Date: August, 7, 2025

BACME statement regarding DecodeME

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The British Association of Clinicians in ME/CFS (BACME) welcomes the publication of findings from the DecodeME study, the largest genetic investigation into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to date.

This robust research has identified eight genetic markers that are significantly more common in people with ME/CFS compared to the general population. These markers are linked to both the immune and nervous systems, providing important evidence for immunological and neurological involvement in this complex and often misunderstood condition.

These findings represent a major step forward in validating the biological basis of ME/CFS. They offer hope for the development of a future diagnostic test and bring long overdue recognition to those living with the condition.

The DecodeME research aligns with the Department of Health and Social Care's Delivery Plan, which emphasises the importance of research, improving understanding of individuals experience of ME/CFS, and enhancing education for health professionals.

BACME strongly supports continued research into the biological mechanisms of ME/CFS and looks forward to seeing these insights translated into clinical practice - ultimately improving diagnosis, treatment, and care for everyone affected by ME/CFS.
 

BACME Conference: Meeting the needs of people living with severe and very severe ME/CFS and their carers​


BACME is pleased to announce we will be holding a half-day online conference focusing on the needs of Severely Affected patients and their carers.

The conference will be held on Friday 17th October 2025 from 9am – 1pm.

The cost will be £35 for members, £50 for non-members.

This will be an ideal opportunity for clinicians to gather knowledge, ideas and expand their competence within this field. Sessions will include a number of speakers focusing on the medical needs of this patient group as well as working with young people, adults and their carers. Book your spaces now!

BACME Conference: Meeting the needs of people living with severe and very severe ME/CFS and their carers - BACME

BACME is pleased to announce we will be holding a half-day online conference focusing on the needs of Severely Affected patients and their carers. The conference will be held on […]
bacme.info bacme.info

Note that this is open to non-members.
 
InitialConditions said:
Note that this is open to non-members.
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The application form makes it pretty clear they intend non members to be clinicians. Applicants are asked to fill in their employment details and what kind of clinician they are.

I hope someone will ask them to open it to pwME and carers. I asked last year for their conference and was told it was members only but they would consider opening future conferences to others. This seems an ideal occasion to do so. I don't have the capacity to ask this myself, nor to attend it.
 
Not much information there.
“Sessions will include a number of speakers focusing on the medical needs of this patient group as well as working with young people, adults and their carers”
So they recognise medical needs. The issue is medical needs being met and medical expertise being developed and interest ignited without actual medics at most BACME clinics.
This is needed but the question is why did this group of clinicians who took upon themselves to staff the clinics, take until 2025 to start start taking this side of things seriously, leaving a gaping hole in service provision, when it was all covered in the CMO report of 2002 which included patient recommendations that were not listened to
 
hotblack said:
Yes. Overall it seems like they put a lot of work into trying to say “we do believe it’s a real thing now we’re just trying to help people” to give themselves cover for an approach which is based in rehabilitation and psychology, while lacking any evidence for this beyond their own ‘experience’.

If we ignore all the distractions and wrapping that’s the core.
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Well it’s their own personal internal psychology not any medical or scientific one ie tropes that need to be treated towards a patient group that are unjustified and unevidenced so really should be banned and seen as at least antisocial and in a professional context evidence of discrimination by having inaccurate beliefs towards a group.

We can’t go around saying things like ‘people in bacme can’t think right because they must have some sort of past trauma turning them into bad thinkers’ having spent years before telling everyone ‘people in bacme can’t think right because they have false beliefs that they are ill and are just fearful of having to do their jobs right’ and claim it’s psychology but at least we’d have between of us more qualifications in the actual subject to do so and would be no less licensed than they are to be making such assertions (they aren’t licensed psychs being monitored for spreading harmful unevidenced things by a licensing body in psych)

A physio who did a niche (as phd’s are) phd in pain focusing on tens machines in a different group of patients shouldn’t have the right to go round saying rumours like ‘patients have trauma’ just to try and sell what they want to sell to third parties to do to us.

It is a harmful slur to inaccurately make such assertions about broad groups,
Peter T said:
This type of approach is what specialist services and BACME should be promoting. With many of the UK specialist services now in place for over a decade, there is an enormous amount of lost opportunity to collect knowledge and good practice, from helping work situations accommodate people with ME through to the sorts of threads we have here on the best mattresses or sheets.

The focus on rehabilitation that does not work has meant that other opportunities have been missed. A lot of individual therapists must have built up expertise and knowledge but there does not currently seem to be a forum to share it. Presumably addressing these issues is frowned on by high profile service leaders whose reputation is dependent on such as CBT or GET as curative treatments.
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this. So relevant right now

And the difference is respect , people with proper respect

And who are prepared to allow those they have power over (but shouldn't, they are just 'nicking it' by taking their role out of context - and it is this use of slurs that is the weapon they are using to get away with such oversteps by using inferences of mad/bad patients to silence their testimony) dignity and maybe even autonomy.
 
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In my minds eye I’m seeing a pie chart of how much of a document refers to “increase” of activity (say, 25%) vs how many pwME have “found” their established baseline (say, 10%) then increased beyond it by choice, without consequence (about 1%)

The greatest work for pwME is getting used to having ME and pacing, it takes years and years. The “increasing” by choice part is so very rare and unusual and it gets talked up so much in these documents. It creates a psychological pressure that you should be able to, also there is the tantalising unspoken temptation of (whisper it….)maybe getting back to normal?
 
I wouldn’t expect a heart surgeon to say they had perfected a technique based on their knowledge and the individual patients needs, but not share what it is, leaving other colleagues unable to learn from them, leaving patients unsure of what their operation involved.

So I’m appalled that there are a group of “therapists” withholding their secret special therapy for ME which can only be accessed if you’re treated at an NHS clinic that has a BACME member.

Pics or it didn’t happen, as the kids say.
 
MrMagoo said:
In my minds eye I’m seeing a pie chart of how much of a document refers to “increase” of activity (say, 25%) vs how many pwME have “found” their established baseline (say, 10%) then increased beyond it by choice, without consequence (about 1%)

The greatest work for pwME is getting used to having ME and pacing, it takes years and years. The “increasing” by choice part is so very rare and unusual and it gets talked up so much in these documents. It creates a psychological pressure that you should be able to, also there is the tantalising unspoken temptation of (whisper it….)maybe getting back to normal?
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and of course it is all nonsense when it is measured by those with conflicts of interest.

I assume everyone is aware for example of the 'value-added' measure that schools used to have to provide data on (and probably still do I just haven't checked lately), which means eg reading age is assessed at the start of the school and then again at the end = what the school year has 'added'. That at least I assume has somewhat logical checks and balances in that it will be different teachers each year after that first year at school ie 'end of last year' vs 'start of new year' can't go backwards without an issue needing to be identified etc.

But here, as we know even those of us many years in can't identify some guaranteed baseline because you can't control everything so are always in the middle of getting over 'PEM from that big appointment or virus' and whatever has gone on that week or day making you feel better or worse. So don't know, just have to assume after that we'll be back to approx wher we were. And we can only confirm we've got it wrong in hindsight by the very nature of the illness being 'if we are consistently over-threshold then it cumulates up to a deterioration' etc.

So newbies, mainly the only people they are dealing with, have no chance - particularly when BACME communication style is the opposite of what is needed to elicit information from someone with ME/CFS but instead force them to 'say something' and risks putting words in their mouth.

Given the actual therapists direct influence over what that 'agreed baseline' is put down as this presents such a conflict of interest that the pwme in the middle of a very difficult and gaslighted time (and just needing adjustments) will be completely unaware of when they are being 'asked to agree' etc. and thinking that it is just someone who is focusing merely on their health.
 
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