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

Jonathan Edwards said:
I understand that this is what is being done here on S4ME.
Doctors for ME isn't really a clinicians' organisation and has put out some misleading material.
If you want something done, best to...
Click to expand...
That's why I suggested PPI input sourced from here but because of the history of lobbying (Cochrane etc) , S4me is perceived as a very partisan, heavily patient led body so would not be credible for such a role (sorry) .

To be effective politically imo it would need to be seen to be coming from a neutral and independent clinician-led body with broad support. Similar to BACME but without their bias and deviations from nice etc. Such an organisation doesn't exist right now, eta sfaik, happy to be corrected.
 
Jonathan Edwards said:
And it isn't going to for a bit. Surely what is needed is the 'material' with reliable information. We can produce that. If the clinicians change their position to ours then they can use it. If they don't then nothing is going to happen anyway.
Click to expand...
In an ideal world that would be true. I don't think medical politics is that logical sadly this has become too idelogical. I feel we need an organisation to do damage limitation before that happens, and to be ready when it does as idealogues embedded in BACME will resist that evidence for their whole careers as Wessely has done.
Nice should have been sufficient to serve as that bulwark, but the developments of the CKS, Elaros apps, MEA and BACME embedding itself even deeper into the medical infrastructure are collectively of deep concern.
 
This is why the messages and showcasing by the new holy alliance; flagged up at the recent MEA Seminar,
should be scrutinised, and their game plans open to the receiving public.

This is all about the intent to serve the new Government Digital drive, enshrined in the 10 year plan.

Since 2nd July, privately, we in Suffolk ICB, who were 'invited' to be contributors to the Seminar to 'showcase' the Integration coproduction work and outcomes, (we involved with that 'show case' but have been excluded by ICB and ICB from co- delivery since September 2024, during which MEA took our place it appears)

We also have been excluded by MEA of viewing the very showcasing of our involvement and the March 2024 achievement.

So has the NHS manager who drive this achievement.

Why?
Because we excluded, knew intimately what was in that Business Plan, Draft Specification version 3 and Pathway.

By releasing the seminars the CHANGES made over the last year, the content and direction are likely to be revealed.

And Russell has been negotiating, wheeler dealering, with the invite to him given by BACME summer 2024 to their inner circle.
But hey! He is non clinical!! So how does that work?

I resent and reject MEA's partisan approach to our Service delivery.

I would go further to suggest that what has happened since March last year is a breach of the Care Act 2014 on Coproduction requirements.

It's discriminatory against patients and breaches our ICB Governance on Terms of Reference and resulting Task and Finish of Co Production.

I have attended SNEE ICB Meetings in public and made the challenge on this; through the questions I made, which remain recorded and available in public on SNEE YouTube.

July, September, November 2024
January, May and
July 2025



2hrs 47 mins into meeting.

I pose 2 questions. I MEA SNEE ICB Seminar release
2nd question re. Air Quality - Quarry and health impacts.

I take breaches of the legislation very seriously, as do I to this MEA secret and covert approach to Integration and NH Ssrvice delivery.
This matter is far from closed for us here, 'Excluded from Suffolk'.

Complaints have been made to ME which remain unresolved.
This may need to be referred to higher authority.

Charles stated this week, he has no access to this MEA material and cannot approve the release of it, which is worrying in itself.
Karren, MEA Head of Service MEA has yet to answer to me about this. The right hand does not appear to know what the left hand is doing?

Like Trish, I intend to make public the email trail I have on this, plus the record of telephone conversations I have had with CEO Paul O'Brien Eleros.

I will also release evidence of that another patient group have been negotiating over this holy partnership over the past couple of years without scrutiny and it appears, without our knowledge consent.

Who needs friends like MEA etc, when the 'enemy' is within?

I no longer can have any in trust in the MEA, (as happened in 2005 with same at AYME and at AFME) or trust in it's integrity.

Trustees need to deal with this.
Russell appears to me to be dragging the charity into disrepute and at worst, potentially challengable breaches of the law and Care Act. He needs dealing with.

BACME, Elaros and Russell had nothing to do with this new SNEE service delivery achievement. Neither did the SNEE Seminar deliverer.

The key to opening that door on 5his can of worms is Russell Fleming of the ME, who Charles states is on holiday till the 21st July.
 
Last edited:
Source: British Association of Clinicians in ME/CFS (BACME)
Date: October 17, 2025
URL: https://bacme.info/event/bacme-conference-20251017/

BACME Conference:
Meeting the needs of people living with severe and very severe ME/CFS and their carers
-------------------------------------------------October 17, 2025 - 9:00 am - 1:00 pm BST. Virtual Event

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 pounds for members, 50 pounds 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!

[Form]
 
Tom Kindlon said:
Source: British Association of Clinicians in ME/CFS (BACME)
Date: October 17, 2025
URL: https://bacme.info/event/bacme-conference-20251017/

BACME Conference:
Meeting the needs of people living with severe and very severe ME/CFS and their carers
-------------------------------------------------October 17, 2025 - 9:00 am - 1:00 pm BST. Virtual Event

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 pounds for members, 50 pounds 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!

[Form]
Click to expand...

Why does my heart sink when I read this?
 
Source: British Association of Clinicians in ME/CFS (BACME) Date: July 22, 2025 URL: https://bacme.info

BACME on DHSC Delivery Plan ---------------------------

The British Association of Clinicians in ME/CFS (BACME) welcomes publication of the DHSC ME/CFS Delivery Plan on 22 July 2025. Provision of care closer to home, improving training for all health and social care staff, expanded NHS ME/CFS specialist services and funded opportunities for research into ME/CFS are much needed. The DHCS ME/CFS Delivery Plan goes some way in outlining these targets. BACME would like to thank people living with ME/CFS, their carers and families, clinicians working in specialist and other services and the researchers who all contributed to the plan.

BACME shares the concerns of the charities working with people living with ME/CFS highlighting that this Delivery Plan does not go far enough. It does not offer sufficient urgency, funding or resources to realise the ambitions of clinicians and researchers working in this medical field.

BACME supports specialist ME/CFS clinicians to deliver high quality clinically effective care. We regularly hear reports from our members about how challenging this is to achieve within the current state of the NHS. There is the added challenge that ME/CFS does not sit within a specific medical discipline so cannot compete for clinical resources and research funding.

BACME supports the need for more ME/CFS medical specialists, nurses and therapists, with increased access to prescribing and capacity to conduct clinical research, alongside continued delivery of existing NHS specialist services. We continue to highlight the need to significantly improve treatment, care and support for children and young people and those who are severely and very severely affected living with ME/CFS.

BACME welcomes all action to improve the care of people living with ME/CFS through increased awareness and understanding of the condition, specific education and training for clinicians working across the NHS, and more opportunities for high quality research. BACME is committed to working alongside people living with ME/CFS, their carers and families, NHS commissioners and Integrated Care Boards, patient charities, researchers, and all committed to deliver the DHSC plan and beyond.

Anna Gregorowski, BACME Chair and BACME Board members past and present who contributed to the development of the DHSC Delivery Plan

Discuss on the Delivery Plan thread here.
 
Last edited by a moderator:
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.
Click to expand...
something to do with the cliche of having to untangle the box of fairy lights you just chucked in last xmas and see if any bulbs have gone/they still work at all?

or maybe something to do with 'these commonly cheer up any student bedroom' idea of having fairy lights in the toolbox?
 
Appendix A from March 2024 Guide to severe ME. BACME
 

Attachments

  • IMG-20250726-WA0010.jpg
    IMG-20250726-WA0010.jpg
    163.3 KB · Views: 13
  • IMG-20250726-WA0009.jpg
    IMG-20250726-WA0009.jpg
    171.3 KB · Views: 14
  • IMG-20250726-WA0008.jpg
    IMG-20250726-WA0008.jpg
    154.3 KB · Views: 11
  • IMG-20250726-WA0007.jpg
    IMG-20250726-WA0007.jpg
    85.7 KB · Views: 11
  • Screenshot_20250726_192109_Chrome.jpg
    Screenshot_20250726_192109_Chrome.jpg
    157.5 KB · Views: 13
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.
Definitions and Abbreviations
BACME: British Association of Clinicians in ME/CFS
CBT: Cognitive Behavioural Therapy
GP: General Practitioner
ME/CFS: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
NICE: National Institute for Health and Care Excellence
NHS: National Health Service
WHO: World Health Organisation
 
Suffolkres said:
Appendix A from March 2024 Guide to severe ME. BACME
Click to expand...
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.
 
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.
Definitions and Abbreviations
BACME: British Association of Clinicians in ME/CFS
CBT: Cognitive Behavioural Therapy
GP: General Practitioner
ME/CFS: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
NICE: National Institute for Health and Care Excellence
NHS: National Health Service
WHO: World Health Organisation
Click to expand...
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’.


Or was this a DONE TO. I assume so? With maybe a carer from the generic PPI being ‘enough’ as far as they care to tick the box?

So they can’t acknowledge the spectrum is one when they either ensure accessibility for their PPI is being directed by those with their own ‘skin in the game/freedom and safety in the line’ experience if severe for enough years.

And don’t want to hear the voices of those who it affects and are horrified what this vile doc is full of slurs. And are just using rude coercion and threats to silence them.

But want to what - claim it has ANY input at all to sign it off as ‘PPI’ for this ‘new level’ they think they can make up crud for.

It’s a new level of crookedness I didn’t think even this lot of people had the moral corruption and badness for. To fake pretending to consult or have patient input. It’s disgusting.
 
You must log in or register to reply here.
Back
Top Bottom