United Kingdom: ME Association news

Sly Saint said:
@Russell Fleming

was here yesterday so is aware of this discussion.
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This discussion has been going on for a long time.
So why has Russell Fleming not engaged with this discussion here?
He is not an elected charity official, he is just a patient, like us.
Does he believe he is in a unique position of not being accountable for his actions, not being accountable to any other patients/patient/advocates?

.
 
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Have we reviewed the above Annual 19 page Report published just before Xmas ( to judge from its concluding with a wish for a happy Xmas to those who observe the holiday season), written by the Hhealthcare Teamh of Ren, Charlotte and Lucy?
There is lots of material outlining the MEA's future aims ( edited in ) as well as an evaluation of current ME /CFS and long covid services.

There may be information that is relevant to what @Suffolkres has been describing.


meassociation.org.uk

MEMBERS ONLY - Notice of Annual General Meeting of The ME Association - The ME Association

To be held on 12 January 2026 starting at 2:00 […]
meassociation.org.uk meassociation.org.uk
The date of this meeting was announced as 12th January 2026. Did anyone attend?


eta: Next steps are outlined on page 18. I have unsuccessfully tried to copy in this page but cannot achieve this, maybe due to my fingertips having completely disappeared.
 
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Robert 1973 said:
V.R.T. said:
I think it was suggested the other day we need a new charity. If reforming AfME like JE has suggested isn't the way to go, then I think that person was right.
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Can someone post a link to that discussion/post please?
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One such thread is here, where Nightsong insisted "And we need a new national charity" as in:

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"We are not going to make any progress until there is a national charity dedicated to a completely different model of care, because the signals that the NHS and the medical establishment are receiving from the charities are completely at odds with the very clear wishes of the broader patient community to receive genuine medical care (even if there is dispute amongst patients as to precisely what that care should include).

The broader patient community needs to be made aware of precisely what the charities are doing, and how negatively it will affect all of our lives.

And we need a new national charity."

"... ... It's also notable that the charities seem to consider themselves to be arbiters of the NICE guideline, rather than advocating for what patients actually want & need ... ....

"The charities should be using the guideline as a cudgel where it is in patients' interests to do so but are in no way obliged to embrace its many flaws & compromises."

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Also, I see the the MEA charity intention to signal throughout the NHS at complete odds with the original wording of our ME/CFS Guideline. And I see the MEA intent on superseding the Guideline where it does say what patients want and need.

Jonathan Edwards added that:

"ThereForME has been very vocal in calling for services and they are very clearly not supporting a psychobehavioural approach ....... .... I see the problem as being one of not understanding the logistics of medical service provision."

I changed my mind about inviting the ThereForME founders to replace Neil Riley, but the MEA might want to join ThereForME, once those clinics the MEA is now "supporting" to renew their contracts also get a grip, and grasp the current logistics of medical provision which will not afford their preposterous theoretical proposals.
 
V.R.T. said:
Lou B Lou said:
... ... it's a Charity Commission matter.
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What would this mean/entail? I think it was suggested the other day we need a new charity. If reforming AfME like JE has suggested isn't the way to go, then I think that person was right. It would be an unthinkable amount of work but a charity connected to S4ME that funded research that members of this forum think is important would be the dream...
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I think we also need proposal of pro-active medical clinics, prepared and formatted in a network to collate research and audit data on their medical operations.

Obviously, for the last 20 years, the "specialist" clinics were not cost-effective, unable to show a success rate, and their accounts likewise cannot withstand scrutiny.

If their clinic contracts won't specify any medical operation, not even wth MEA support, then the B in their vaunted BPS is false advertising to bamboozle the commissioning Integrated Care Boards into renewing their contracts.

But, did the MEA and AFME specify any specialist medical operation for primary care to refer to?

Their current proposals are a cop-out, it looks like these clinics are proposing to withdraw from the field after "equipping" primary care to manage without them IF buying in their MEA-branded tool, which cannot possibly implement our Guideline Recommendations.

Oh happy days. The opportunity was realistic and pragmatic, but not the proposal
 
Binkie4 said:

Have we reviewed the above Annual 19 page Report published just before Xmas ... ... written by the Hhealthcare Teamh of Ren, Charlotte and Lucy? There is lots of material outlining the MEA's future aims ... as well as an evaluation of current ME /CFS and long covid services.

There may be information that is relevant to what @Suffolkres has been describing. ... ... Next steps are outlined on page 18. I have unsuccessfully tried to copy in this page but cannot achieve this, maybe due to my fingertips having completely disappeared.
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Flickering fingertips heh

Page 18 of 19

Next steps

1. Enhance outcomes and quality of life for both patients and caregivers

2. Decrease long-term NHS expenditures through early intervention and preventive care.

3. Align regional services with guidelines from the National Institute for Health and Care Excellence (NICE) and emerging national best practices.

Service plans

The HASC team has effectively enhanced the sharing and adoption of service models among ICBs through targeted networking, e-introductions, and knowledge exchange events.

This effort supports the delivery plan’s goal of promoting consistent and equitable care nationwide while reducing local duplication of efforts.

Roadmap

To increase our impact, we aim to scale up our activities.

While we've mainly interacted with service leads and commissioners, we plan to proactively reach out to services undergoing reviews for support.

Education:

A focus in year 2 will be on educating primary care services

Once patient appointments and care at specialised service centres are completed, care returns to their GP.

Our action plan aims to reassure the audience that patients will receive ongoing, consistent care and will not need to manage their health independently
 
Thank you for covering page 19 @bicentennial. I spent ages trying to copy it in but could be fingerprints.

I have had issues with fingerprints for a while, but last June for the first time, I wasn't allowed into NYC at security in Brooklyn but was taken to a side room by a very puzzled border agent looking at my prints saying he had never seen anything like that. A more senior agent spent a considerable time looking at them, while the sniffer dogs sniffed around. I think they were trying to do comparisons with prints on earlier entries.

Eventually we were let through. i hope it never happens that I'm not let in. No idea what the procedure would be. I am now carrying a medical letter. My prints do look as if they are completely gone now, just a series of deep lines, no whorls.

Next steps for the MEA from their plan
-Decreasing NHS expenditure while scaling up activities.??? Achieving the impossible then.
-A focus in year 2 on educating primary care services- my GP said exasperatedly that nothing could be done without more money. He also pointed out how ICB budgets and sfaff numbers had been cut, by about 50%.

" Our action plan aims to reassure the audience that patients will receive ongoing, consistent care and will not need to manage their health independently". But what ongoing consistent care??
 
Binkie4 said:
" Our action plan aims to reassure the audience that patients will receive ongoing, consistent care and will not need to manage their health independently".

But what ongoing consistent care??
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Plainly a GP in primary care cannot provide for our ongoing specialist service functions as defined by our Recommendations. Nor can a digital app provide this "hands-on" service.

There is no better education than to study the original wording of these Recommendations, with their Glossary, prioritising the Recommendations already prioritised in our Implementation Statement.

Proposed templates do not allow for the patients to communicate "using their own words" as Recommended.

We need to go through the original wording of the Recommendations in our Guideline: work out how our subsidised service aligns with our Implementation of our Guidellne
 
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Happily, our Recommendations do conclusively resolve all such anomalous discord. NICE did insist on this, with supreme confidence, because it is true.

Unhappily, due to the over-emphatic discord, Dr Shepherd had lost confidence. He publicly announced that the world "cannot cope" with the Guideline (a global course of CBT springs to mind, but the government had its own "Nudge" consultancy).

Dr Shepherd then rallied, nevertheless
 
Binkie4 said:
Next steps for the MEA.... * ... Achieving the impossible then, .... * ... A focus .. educating primary care...
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I doubt the MEA has obtained for anyone the contracts it is seeking, however it tries to sound like it got the deal

Our ME/CFS Guideline strictly qualifies who has the skilled self-discipline to guide primary care on its implementation of our Guideline. This is also a prioritised Recommendation in our ME/CFS service Implementation Statement (NICE 2022).

I say this qualified guidance - on the original Guideline - applies to the wording of primary education & training, its exam, assessment, module, handbook, leaflet, pamphlet, seminar, summary and soundbite

So our NHS commissoners are making provision for qualified people to give primary care the crucial and most meticulous guidance on our Guidelines, as originally worded, and including for Guideline guidance on request, case by case, all as intended:

Hence this requirement for skilled self-discipline - so far not shown in the MEA trade proposals

Our commissioners only have to check them aganst the original wording of our Guideline.

There is no better education than to study the original wording of these Recommendations, with their Glossary, prioritising those already prioritised in our Implementation Statement.
 
Binkie4 said:
- A focus .. educating primary care.... ... my GP said exasperatedly that nothing could be done without more money. He also pointed out how ICB budgets and sfaff numbers had been cut, by about 50%.
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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
 
I have not myself assessed the original Suffolk service plan in question - my assessment is of its provenance, and its potential as a prototype for locally co-produced adjustment eg in Norway and Australia. It is not the property of marketeers marketing their highly regulated, importable, medical device (softwares). Naturally the marketeers are extremely keen to validate their national market registrations, which the realistic MEA needs to publish sometime

So given Suffolk's original co-produced plan with its esteemed and highly reputable provenance, and with the high value now unanimously accorded to it, then maybe it is every bit as meticulous and pertinent as it sounds, also making full provision, as recommended, for the required program adjustments. Or at the very least making room for these routine adjustments, hands on, impossible to automate, as follows, for example, as recommended and implemented by our Guideline:

- the case-by-case personal adjustment, as is expected

- use of the patients own words, as is expected

- the right to refuse all or part of a program, and the right to vary drug dosage, etc, as is expected

- adjustable access and advocacy (etc etc), as is expected

- crucially prompt, crucial and ongoing program adjustments to meet all the unpredictable variations of need, as are defined and as expected eg fluctuation, flare-up, and relapse

- local adjustment of commisioned contracts for local service plans, adjustments decided by local commissioners based only on their audited local statistics of local need and affordability, and of course upon local requests from local patients and local professionals as outlined in the Guideline, I think page 2

- medical adjustment by doctors, case by case, based only on their experience and their knowledge of the case
 
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
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SNEE Board meetings are more generally around 3 hours sometimes 4....hours.
It's a very long time to wait to ask unannounced questions in public (on agenda items). ....
But worth the wait, to drop a 3 4 minute bomb or 2,.... or even the odd compliment!
Do it nearly every meeting!

GETs results. Excuse the pun!
 
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