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...
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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.
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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.
 
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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]
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Why does my heart sink when I read this?
 
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