United Kingdom: ME Association news

For historical comparison:

In 2013-14, AfME had 5,129 members in total, with 109 members having had the membership fee waived.
In 2014-15, AfME had 4729 members with 71 members having had the fee waived.


In December 2016, I was told by a member of the MEA's board that the MEA were keeping membership at a level in excess of 4,000 over the previous few years; that there is a constant turnover with around 250 new members joining in a year but then members who do not renew their membership leaving, so figures fluctuate.

 

For comparison, in May 2008, Third Sector journalist, Paul Jump, reported that AfME had 7,630 members [1].

(A figure which was understood at the time to have been falling for several years.)

1 http://www.thirdsector.co.uk/action-membership-row/governance/article/807171

Action for ME in membership row
07 May 2008 by Paul Jump

Action for ME has defended itself after a public protest from a group of disgruntled members who believe they are being denied full membership rights.

[Image caption] Protest: some members want more rights

The charity, which supports people with ME - also known as chronic fatigue syndrome - said that its 7,673 fee-paying members were not entitled to vote at AGMs because they were not members in a legal sense.

A Charity Commission spokeswoman said it had dismissed a number of complaints on the issue between 2003 and 2005. "We were satisfied that there had been a misunderstanding," she said.

The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members' views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine, where the charity's chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.

"Only by re-establishing the democratic link between AfME and its membership will AfME gain a mandate to speak and act on behalf of us," said Ciaran Farrell, a member of AfME. "Filling in a questionnaire is not the same as being able to vote on policy or elect trustees who see things your way."

Richard Evans, trustee and company secretary of AfME, said the charity's website made it clear that "being a member of AfME, the organisation, is not the same as being a member of Action for ME, the company limited by guarantee, as a company law matter".

He said the charity's latest AGM had been held in February and that trustees, who are the only legal members, had been invited.

A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers. She said the disgruntled group had been campaigning against AfME for many years.

Governance expert Judith Rich said charities should hold regular meetings with their memberships regardless of whether it was legally required. "That is the only way charities can be sure they are truly representing the views of their members," she said.

 

Thank goodness for that last para. The ones before it … well… I’d hope most who read it at the time saw right through that statement to see that ‘if there s confusion that being a member isn’t really a member then it’s because they’ve been misled … and the attitude that it’s just confused people rather than a con being flagged they need to explain themselves for stinks’

 

https://twitter.com/user/status/1876660716507197930


ME Association@MEAssociation
Blog Survey: Requesting information about your ME/CFS Diagnosis The ME Association invites you to complete our survey relating to diagnosis; looking at before and after the 2021 NICE Guideline on ME/CFS. We are conducting the survey to try to find out if:

- People are being diagnosed earlier
- More attention is being paid by doctors to make sure other possible causes of ME/CFS type symptoms are excluded
- People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared.

Take part in the survey: https://meassociation.org.uk/diag #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #PostCovid #Diagnosis #MECFSSurvey
4:02 PM · Jan 7, 2025

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"People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared."

Pfff!

 

Also laugh out loud lol from me.
Although, if there is somewhere doing care and management plans, this might show us where. I assume they are done in the following parts of the UK-
Narnia
The visiting world at the top of the Faraway Tree
Never Never Land

Appointments are at a billionty past three on the tenth of never.

 

According to our local group, a recent attendee reported that our service still runs sessions lasting two and a half hours. Including dance therapy.

My GP advised me against being referred to it because they expected people to do dance and movement, and that was twenty-six years ago.

You'd almost think nothing had happened since then.

 

It does make you wonder whether anyone at MEA has a clue, doesn't it.
MEA seems to be in danger of turning into a BACME cheerleader troop.

 

I was hacked off when I received my care plan some years ago, which was blank apart from my name, address, and date of birth. I refused to sign it.

I was being unreasonable. There is no care or management for ME/CFS, and the lack of content was accurate and appropriate.

 

That’s two questions in one on the survey proper. Very poor way to phrase a survey question.

 

Survey is here: https://meassociation.org.uk/2025/01/blog-survey-requesting-information-about-your-me-cfs-diagnosis/

 

I filled in the survey. The age shift post 2021 is interesting.

 

Not many responses yet, will be interested to see the final output

 

Yeah. When’s that due?