United Kingdom: ME Association news

Thank you for these observations.

As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal procurement processes.

Our ICB and ICP management, adopted a partisan and biased discriminatory approach at the 7th hour - AFTER the procurement business case, was approved by Clinical Exec.And when a very thorough, experienced, professional lead manager was 'indisposed'!

Most senior management then 'offended' by breaching governance we say, ceasing the 2022 Terms of Reference, Autumn 2024, disbanded long term official reps of 'Lived Experience'....Ignoring survey of early TOR.

And started 'afresh' a new survey out with tbe old and in with the new - and with generic 'hand picked' Focus Group not governed by TOR!!!! And who were completely in the dark about the evolution of service development and delivery.

And favoured MEA over all other charity VS representation! Especially the HASC Team .....(VIP MEA CS was not party to any of this)

None of new shiny focus group had been given sight of Draft Spec which had been Approved early 2024.

But MEA were given it....summer 2024....

(the version given being different to that Approved in early 2024). "And MEA appear to have disseminated it elsewhere....but which version?
We have draft Version control record!

Elsewhere. ? Kent and Medway...?

As procurement hit, Jan 2025, 2 original TOR reps were thrown out, permanently excluded from SU Engagement by anon ICB/ICP letter Feb 2025.....

And meanwhile. MEA cosied up to BACME, Eleros et al - hence the 'showcase' presentation SNEEICB replacement manager bod, on 2nd July 2025......

Credit for Spec Pathway and good Lived Experience record, history and evolution, all rewritten to build the egos of the 2025 extant ICB, undeserving staff and charity involved... .

I and others are livid!
 
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Thank you @Nightsong and @Suffolkres. Your information is seriously worrying. What on earth are the MEA doing. I despair. I haven't dared to ask what's happening in my local area (Dorset). Last I heard they were full on BACME with added quackery.

I note that the MEA AGM is coming up shortly. I'm no longer a member. I hope those who are have lodged serious objections. If I had any energy to spare I would rejoin, but I don't.
 
Suffolkres said:
Thank you for these observations.

As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal procurement processes.

Our ICB and ICP management, adopted a partisan and biased discriminatory approach at the 7th hour - AFTER the procurement business case, was approved by Clinical Exec.And when a very thorough, experienced, professional lead manager was 'indisposed'!

Most senior management then 'offended' by breaching governance we say, ceasing the 2022 Terms of Reference, Autumn 2024, disbanded long term official reps of 'Lived Experience'....Ignoring survey of early TOR.

And started 'afresh' a new survey out with tbe old and in with the new - and with generic 'hand picked' Focus Group not governed by TOR!!!! And who were completely in the dark about the evolution of service development and delivery.

And favoured MEA over all other charity VS representation! Especially the HASC Team .....(VIP MEA CS was not party to any of this)

None of new shiny focus group had been given sight of Draft Spec which had been Approved early 2024.

But MEA were given it....summer 2024....

(the version given being different to that Approved in early 2024). "And MEA appear to have disseminated it elsewhere....but which version?
We have draft Version control record!

Elsewhere. ? Kent and Medway...?

As procurement hit, Jan 2025, 2 original TOR reps were thrown out, permanently excluded from SU Engagement by anon ICB/ICP letter Feb 2025.....

And meanwhile. MEA cosied up to BACME, Eleros et al - hence the 'showcase' presentation SNEEICB replacement manager bod, on 2nd July 2025......

Credit for Spec Pathway and good Lived Experience record, history and evolution, all rewritten to build the egos of the 2025 extant ICB, undeserving staff and charity involved... .

I and others are livid!
Click to expand...
Well that explains why I have been offered nothing except an online fatigue group course so far. Had to postpone my follow up the other day but it wasn't looking so positive for Suffolk ME services from the first meeting.
 
It’s incredibly disappointing to see. In this respect the MEA are acting as the useful fool rather than standing up for and representing the interests of patients. We’ve seen it with patient organisations and charities before, it reminds me of the path of the Sussex & Kent ME/CFS Society and services here, but still…
 
Suffolkres said:
Thank you for these observations.

As of yesterday, I have secured more evidence of what MEA have been doing, how they have been brokering in service, development, providing unqualified 'opinions', ..... which contribute to ICB behaviours (or misbehaviours!) and finally results in legal procurement processes.

Our ICB and ICP management, adopted a partisan and biased discriminatory approach at the 7th hour - AFTER the procurement business case, was approved by Clinical Exec.And when a very thorough, experienced, professional lead manager was 'indisposed'!

Most senior management then 'offended' by breaching governance we say, ceasing the 2022 Terms of Reference, Autumn 2024, disbanded long term official reps of 'Lived Experience'....Ignoring survey of early TOR.

And started 'afresh' a new survey out with tbe old and in with the new - and with generic 'hand picked' Focus Group not governed by TOR!!!! And who were completely in the dark about the evolution of service development and delivery.

And favoured MEA over all other charity VS representation! Especially the HASC Team .....(VIP MEA CS was not party to any of this)

None of new shiny focus group had been given sight of Draft Spec which had been Approved early 2024.

But MEA were given it....summer 2024....

(the version given being different to that Approved in early 2024). "And MEA appear to have disseminated it elsewhere....but which version?
We have draft Version control record!

Elsewhere. ? Kent and Medway...?

As procurement hit, Jan 2025, 2 original TOR reps were thrown out, permanently excluded from SU Engagement by anon ICB/ICP letter Feb 2025.....

And meanwhile. MEA cosied up to BACME, Eleros et al - hence the 'showcase' presentation SNEEICB replacement manager bod, on 2nd July 2025......

Credit for Spec Pathway and good Lived Experience record, history and evolution, all rewritten to build the egos of the 2025 extant ICB, undeserving staff and charity involved... .

I and others are livid!
Click to expand...
Are other charities aware of this ?
 
Suffolkres said:
Not sure, but trustees and medical advisors in MEA don't seem to be any the wiser.
Some fully paid up charity employees keep matters very much close to their chests, it appears from our observations.
And seem to be given a free reign.....
Click to expand...

This is dreadful, does anyone know anything about the 3 people in their new Healthcare team, such as previous roles/employment/knwledge of ME..
Are you planning to email the Trustees about this formally?
 
MEMarge said:
This is dreadful, does anyone know anything about the 3 people in their new Healthcare team, such as previous roles/employment/knwledge of ME..
Are you planning to email the Trustees about this formally?
Click to expand...
In confidence please - my email of 24th July 2025 to which, as yet, I have received nil response.
‐--------------
'Date: Thu, 24 Jul 2025, 08:12
Subject: [LocalME] Seminar recording release
To: Russell Fleming <russell.fleming@meassociation.org.uk>


Cc: , (SNEE ICB)
Charles Shepherd <charles.shepherd@meassociation.org.uk>, Karren Winters-Cavalot <karren@meassociation.org.uk>


Dear Russell,

I hope you had a good holiday break until 21st July.

As yet, you do not appear to have responded to my emails or actioned my reasonable requests?

Whilst I do not 'qualify', according to your criteria, as host of the Semiar, facilited only by Eleros, so they tell me, I have supplied the NHS email and contact link who was also booked by me to attend, but couldn't on the day due to a clash with one by Sir James Macay.

I have been in touch with Paul O'Brien and Roman (Eleros) over release of recording of Seminar to the NHS email. I believe they have no problem with facilitating release. I am organising a meeting with them on their invitation soon.

In addition, I have asked Karren and Charles who say they could not access the recording, suggesting only you can.

I have checked with Deputy CEO of SNEE ICB at the ICB Meeting in Public on 15th July. I will release that question in the public recording, as it is intended public domain.

Deputy CEO, Richard has no problem either with release of the recording - which you flag as being in collaboration with SNEEICB and the Seminar posting you advertised carried their logo.

So please can you sent the recording forthwith? Please also send it to Richard Watson SNEEICB.

The Seminar showcases the work and development of our co-poduced service work.

Frankly Russell, the withholding of this showcase from the person who delivered the approved business case to the ICB Clinical Executive, is both disrespectful and reputationally, potentially damaging.

If there is any further issues requiring clarification, please ring me.

I really am quite unwell at the moment and this situation has caused me further stress and work.

We are days away from our new Service commenment on the 1st August as you will be aware. I have devoted as a carer and member of the Voluntary Sector, 30 years to secure a service.

I have had the most engaging helpful and respectfully relationship with the ME for most of that time (apart from around the 2002 hiatus and Val Hockley stewardship.)

So please begin to build bridges and restore that faith and trust, which is fast disappearing with the release of the crass NHS Delivery Plan, before it is too late.



07*************

Regards,

B R


Cc MEA Trustees
SNEEICB PALS
 
Thanks....
On the other hand, I did raise the issue in questionds from public at ICB meeting. At Essex U diversity.... which was recorded and is still on line..... Dissatisfaction and disrespect,
It needs to be put in public.

ICB Board meeting, 15 July 2025

Members of the public are invited to attend the meeting in person. Alternatively, you can view the meeting live via YouTube or watch the recording at a later time. Please see details below. Board agendas and meeting papers are available to view online one week ahead of the meetings. An...
suffolkandnortheastessex.icb.nhs.uk suffolkandnortheastessex.icb.nhs.uk
At end

2.46 mins on Transcript also available.
 
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  • He joined the charity 10 years ago, first as a volunteer, working on several niche projects, before accepting a part-time position as the Website and Social Media Manager.As his illness stabilised and his functional abilities improved, Russell took a full-time position as Communications Manager in 2020 continuing to work from home.
  • In 2022, he was charged with more responsibility to oversee all activities relating to; fundraising, public relations, the 2 magazines, the website and website shop, literature, research reporting, benefits reporting, public information and support requests, and social media.
  • In 2024, Russell took on a new role as head of project development and looks forward to producing viable projects that will help the charity achieve its objectives and bring further support to the patient community.
  • Russell lives in North Cornwall and is fortunate to have good support in place. He lives with Buster, a 3 year-old Labrador, and is enjoying greater freedoms now he is able to drive again.

The above is from the website info at MEA

The level of responsibility, without apparent oversight is terrifying and detrimental to the MEA, its members and everyone whose lives are affected by ME
 
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