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The ME Association – Post AGM Statement - The ME Association

Stage 3 Announcement Winter 2025 Following the December 2024 AGM, […]
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The ME Association – Post AGM Statement​

January 12, 2026

​

Stage 3 Announcement Winter 2025​

Following the December 2024 AGM, the Board commissioned an independent governance review to assess how effectively the charity’s structure, leadership arrangements, and working practices support its mission. The review also sought to identify changes required to ensure long-term sustainability, accountability, and organisational clarity.

In autumn 2025, the Trustees issued internal and external Stage 1 statements outlining the key findings of the review. A number of recommendations, particularly those relating to strategy, Board recruitment, leadership structure (including the introduction of a CEO/Director role), the removal of executive functions from Trustees, and the development of an annual business/operational plan, were strategic in nature.

As a result, in December 2025 the Trustees issued Stage 2 internal and external statements setting out a proposed new corporate structure. This structure is organised into strategic Divisions designed to respond to the review’s recommendations and align directly with the charity’s core strategic functions:

  • Support
  • Educate & Influence
  • Research
  • Finance & Operations
  • Income
The charity is currently in a consultation period, which runs until 16 January 2026.

The governance review produced 49 recommendations. To date:

  • 14 recommendations have been completed
  • 22 recommendations are in progress and linked to the proposed Divisional structure
The remaining recommendations relate to medium- to long-term actions, including:

  • Reserves
  • Trustee recruitment, tenure, and review processes
  • Associate trusteeship
Since the December 2024 AGM, the ME Association has committed to funding just over £2 million in research projects. This level of investment will significantly reduce reserves over the next two years. A large proportion of this committed spend will be met from general funds, built from legacies.

The charity’s conservative reserves policy over the past 20 years has enabled it to fund major initiatives, including:

Without building and maintaining adequate reserves, the charity would not be able to fund significant and meaningful research, support, and educational projects.

Trustee payments were also considered as part of the governance review and are managed in accordance with the charity’s Articles of Association, the Trustee Act 2000, and Charity Commission guidance.

The review highlighted a number of trustee-related issues that are currently being addressed and was complimentary of the associate trustee system. It recommended consideration of trustee tenure lengths and the recruitment of new trustees. This charity is currently considering four potential new trustees and will undertake a wider recruitment campaign if required. A formal trustee review and tenure regime, exceeding the recommendations of the Charity Governance Code (CGC) will be implemented.

Both Trustee tenure arrangements and Associate Trusteeship will be introduced through amendments to the charity’s Articles of Association.

We continue to be committed to working together with MEA members and the ME/CFS community, and remain focused on improving the quality of life for those affected by ME/CFS. We will do this by providing support and information; funding research to find biomedical markers and treatments and educating, influencing, and informing a broad eco-system that includes media, politicians, educators, health and social care providers and the commercial sector. This has always been and continues to be our focus, and we are grateful for the support we receive in realising these goals.
 
bicentennial said:
Ahaha, just as i was thinking that - possibly - the prospecting trading partners eg Tyson, Elaros, and our MEA made their trade proposal to Suffolk NEE, but are not at all aware of the current ICB criteria and procedures, since they probably don't attend to the 2 hour Board Meetings on local affordability, needs and distributions etc .

The NHS commissioners cannot splash out on a life-coach program however short and sweet, also its overpriced itself, presenting itself as a "specialist" service
Click to expand...
Comment 1.

Well explained.
I went to the ICB Board meeting with concerns over MEA ELeros and Tyson's trade proposals and appeals to make good use of their Apps.

This was after the July 2025 Web Seminar from which I was excluded attendance and denied a recording by MEA. They have blanked my appeals to have a copy even though it was to 'showcasing' work I have been involved with 2006- May 2024.

Work resulting in March 2024, with a 'best fit' business model Service Specification and Pathway endorsed by ICB Clinical Exec, and finally ratified with ICB Board November 2024, to go out to Procurement, (with a modified Spec and Pathway - not agreed under our co production Terms of Reference under ICB governance....)

The deputy CEO assured me at the ICB Meeting in January 2025 they, the ICB, HAD NOT signed up with this trade agreement ! (Eleros) etc

Also medical lead of the GP Federation provider who were awarded contract is wary of this APP approach.

This thead on S4ME;

1. (picking up page 18 and 19)

2. together with FOI 5096 to SNEEICB of all MEA communications between SNEE ICB new Management for Service through to Procurement

3. Seminar recording of which I now have a copy co Elaros but not by MEA.

Collectivey shows what MEA's involvement was,

what their game plan is,

and just how fundernentally they have let us down,

by suggesting involvement to 'help us', but really taking our work to further their own ambitions, offering our Suffolk hard fought Spec and Pathway, (version 11), as a 'template model' elsewhere to other ICBs, ..

without those ICBs having to have the proper patient involvement through Coproduction, directly to shape their own Services models preferences. ( NB reliance on restricted focus groups is NOT proper co production).

So, in my FOI, RF specifics ICB areas which would benefit from his brokering.

There is even an invitation by managers and negotiation with RF about an 'independant expert' to be secured on the Procurement Panel for Suffolk's Procurement process oversight!

The OT lead from Cornwall (Devon and Exeter )....... though that never came to fruition.
 
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Suffolkres said:
Comment 1.

Well explained.
I went to the ICB Board meeting with concerns over MEA ELeros and Tyson's trade proposals and appeals to make good use of their Apps.

This was after the July 2025 Web Seminar from which I was excluded attendance and denied a recording by MEA. They have blanked my appeals to have a copy even though it was to 'showcasing' work I have been involved with 2006- May 2024.

Work resulting in March 2024, with a 'best fit' business model Service Sprcification and Pathway endorsed by ICB Clinical Exec and finally ratified with ICB Board November 2024 to go out to Procurement, (with a modified Spec and Pathway not agreed under our co production Terms of Reference under ICB governance....)

The deputy CEO assured me at the ICB Meeting in January 2025 they, the ICB, HAD NOT signed up with this trade agreement ! (Eleros) etc

Also medical lead of the GP Federation provider who were awarded contract is wary of this APP approach.

This thead on S4ME;

1. (picking up page 18 and 19)
2. together with FOI 5096 to SNEEICB of all MEA communications between SNEE ICB new Management for Service through to Procurement
3. Seminar recording of which I now have a copy co Elaros but not by MEA.

Collectivey shows what MEA's involvement was,

what their game plan is,

and just how fundernentally they have let us down,

by suggesting involvement to help us, but really taking our work to further their own ambitions, offering our Suffolk hard fought Spec and Pathway, (version 11), as a 'template model' elsewhere to other ICBs, ..

without those ICBs having to have the proper patient involvement through Coproduction, directly to shape their own Services models preferences. ( NB reliance on restricted focus groups is NOT proper co production).

So, in my FOI, RF specifics ICB areas which would benefit from his brokering.

There is even an invitation by managers and negotiation about an 'independant expert' to be secured on the Procurement Panel for Suffolk's Procurement process oversight!

The OT lead from Cornwall (Devon and Exeter )....... though that never came to fruition.
Click to expand...
Comment. 2
RF has not been operating in good faith.

He has been like a magpie!
Dipping in and dipping out.
Wheeler dealing and trade our wares.
If 'our wares' were really good, then maybe no harms would be done.

But, we lost control of our wares in May 2024 * by ICB excluding 2 of us) and had little control over final draft spec version..

Only by several formal complaints to CEO could we renegotiate back in what had been removed (draft version 4 in March 2024) through to draft version 11 in October 2024

to last version draft 17 within Procurement..... Jan 2025.

We even had to insist on proper version control of the spec document to capture a proper audit trail and evidence of responsibility.

What a sad and sorry saga this has been.
But, it does demonstrate just how messy this all is.

It had had a profoundly damaging and detrimental effect on original patients involved under proper TOR.

It has breached the Equalities Act and they ICB know it.
 
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