United Kingdom: ME Association news

Just for clarity: This comment quotes the the criticized leaflet, it's not an actual comment, but cites what the MEA intents to point out as outdated.

link to leaflet: here

 

The sub post is a quote from the leaflet (not the view of the MEA we hope) see screening

bonus flow chart from the same leaflet showing the factors which may perpetuate CFS- Guilt, denial, anxiety, stress, poor diet, boom and bust…

 

Yes they didn’t make that clear at all. It feels like that place is ablaze and CS is there holding a small bottle of water.

 

Facebook post link:

https://www.facebook.com/meassociat...1v7jHq2Vxi22EwWjoAW8xYdmAPSq6cCl?locale=en_GB

On the Facebook post:

"ME Association limited who can comment on this post."

Well, they would do that, wouldn't they.

On the MEA's website:

https://meassociation.org.uk/2024/11/autumn-2024-editorial-statement-from-neil-riley-mea-chairman/

Autumn 2024 Editorial: Statement from Neil Riley, MEA Chairman
November 19, 2024

I’d like to take this opportunity to respond formally to feedback expressed concerning my Editorial in the last ME Essential Magazine. First and foremost, I apologise wholeheartedly for any undue upset that the article caused. The piece was an opinion piece and was never written in a way to diminish or belittle the suffering we have all undergone in our lives.

I’m proud of the work undertaken by the MEA over the last 40 years and the work must continue. I’d like to take this opportunity to clarify some of the things I have said and reassure the community that as someone who has been severely affected by ME/CFS, that I do understand fully what life is like for us day in and day out.

I was not advocating any type of Graded Exercise Therapy: – Heaven forbid. That is the last thing I would do and goes against all my knowledge of the illness. I was concerned that my experience of illness before ME hit me was that, after the initial infection, I would steadily recover. But ME proved me wrong. I still felt terrible. Months and years went by. I still felt unwell. Finally, I thought, to hell with it, I must try and get out of bed even if some symptoms hit me. So, I did. The result was a life that was a bit better. Sure, I got knocked back and still do. Editorials are an expression of opinion and mine was based on my experience, but I fully understand that this is not reflective on many and in future I will not express my experience in this manner.

Allowing your body to rest: – I agree that this is a tough test for us all. Most of us with ME were achievers, driven people who want to do stuff and to try and stop ‘doing’ needs a lot of will power and patience. Nowhere have I advocated ‘not resting’. It is crucial that we do, otherwise we go beyond our energy envelope and relapse. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.

That I was encouraging people to “push through” no matter what: – I did not and do not advise people to do that. I mentioned the risk in staying permanently in bed and the risk of ‘moving’.

“You are dismissive of the lived experience of people with ME”: -That is simply untrue. I have spoken to hundreds of sufferers and read thousands of accounts of the lives of people with ME. In addition, I live it every day and have for 38 years. I hate this illness. It robbed me, as it robs you, of a normal life. The lived experience of ME people is wide and huge. Some mildly affected, some moderate, some severe. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.

The MEA has, for 40 years, been a staunch opponent of the psychological/psychiatric lobby. We know that this illness is physical and biological.

We do not give direct advice but share information and support individuals in making their own decisions about how to handle their condition through the many different methods available such as pacing. There’s no one size fits all treatment. We wish there was.

Currently, in addition to our funding of all of the basic running costs of the ME Biobank at LSHTM, we are funding just about every ME/CFS research group here in the UK and are also in the process of funding a large treatment trial.

Our vision is to improve the lives of those with ME/CFS and we do this by providing information, and support; funding and supporting biomedical research; providing education and training for professionals and all parties interested in the illness.

Of course ultimately we want to find the solution. In the meantime, all of us affected must come together, focussing our efforts and resources on achieving our goals.

Neil Riley,
Chairman of Trustees.
The ME Association.

More discussion of the editorial and apology here:
United Kingdom: ME Association governance issues

 

An information and support charity should give only relevant accurate information, and it should be supportive.

 

So, from the email I have just had from the MEA, the AGM is going ahead on the 9th.

—

- FOR MEMBERS OF THE ME ASSOCIATION ONLY -

AGM December 2024 Statement

THE ME ASSOCIATION: AGENDA FOR THE ANNUAL GENERAL MEETING

1. CHAIRMAN’S WELCOME
   
   
2. APOLOGIES for absence
   
   
3. MINUTES – Minutes of the last AGM, held by video conferencing and at Unit 7 Apollo Office Court, Gawcott on 11th December 2023 to be put before the Meeting for approval. Their acceptance to be moved by Chairman, a seconder sought and a vote taken.
   
   
4. CHAIRMAN’S REPORT – 2023 as published on the website of the ME Association.
   
   
5. FINANCIAL STATEMENTS – year ended 31 December 2023, available through the website of the ME Association.
   
   
6. INDEPENDENT EXAMINERS (of Accounts) – proposal for the reappointment of Astral Accountancy of Bicester as auditors of the accounts of The ME Association. To be moved and seconded and put to a vote.
   
   
7. ANY OTHER BUSINESS

To be held by Team Video Conferencing and Office at Gawcott at 2.00pm on Monday 9th December 2024

ETA details

Post copied here:United Kingdom: ME Association governance issues

 

https://twitter.com/user/status/1864784633130361075


Apparently at last year’s @MEAssociation AGM only 1 member attended - an ME Assn employee.

That is shameful.

Post copied here:United Kingdom: ME Association governance issues

 

https://twitter.com/user/status/1866172381620003123


ME Association
@MEAssociation

ME Association Post AGM Statement Thank you to all our members who joined the ME Association’s AGM on Monday 9th December 2024 at 2pm, we value your contribution. Read in full here: https://meassociation.org.uk/agms #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #Research #AGM2024

----------------------------------------------------------------------

For ease of access, I've put the statement into a PDF and also attached a copy:

https://dxrevisionwatch.com/wp-content/uploads/2024/12/me-association-post-agm-statement.pdf

Post copied and statement also discussed here:
United Kingdom: ME Association governance issues

 

https://twitter.com/user/status/1866173202788917619


ME Association@MEAssociation

To all supporters/followers, if you'd like to raise any other questions, please email using the contact form on the website or using the admin@meassociationorg.uk email address. https://meassociation.org.uk/contact-me-association/… Thank you kindly! - Emma
5:28 PM · Dec 9, 2024

 

I had a read of tweets, but not well enough to do screenshots and commentary.

Thanks to Nic and Pete et al who asked questions. It sounded like it wasn’t all terrible (but it was a bit terrible) very old fashioned approach, felt to me like “we work so hard for you and you don’t even appreciate it, you just complain” Interesting plans for future projects they are funding, they are going to set up a forum apparently.

Not enough applications from members to be a trustee(except you don’t need to be a member to be a trustee)they love a straw man.

 

Do we need another forum? Doesn’t feel like the best use of resources to me.

 

• An online community forum will be launched in 2025.

Jeez, does Charles not remember their MEssageUK forum and what happened to that?

 

Is it for us, or for them? Presumably they will moderate it, save the poor lambs from mean social media comments.

Charles is on Facebook 7 days a week replying to comments, apparently. That’s…not healthy in my view.

 

Given how they are currently censoring comments on Facebook and Twitter/X what would be the purpose of an MEA forum?

Any forum is going to create a lot of work for them. Especially if its a pre-moderated forum.

 

I suspect it is Charles, then, who's been stripping out all comments on the Riley issue and AGM.

 

I'll give it 6 months before they close it down.

 

"Expansion of the Communications team with the appointment of two new members of staff to manage our digital platforms (with over 70k social media followers reaching over 3.5m people and a million website users, we intend to expand our activity across other platforms; use more video content; become even more accessible; and make more platform specific content to reach more people)."


So long as you don't ask awkward questions.

 

Reach more people? Not members, just people? They’re going to have to get used to “people” scrutinising them.
Also, it feels like saying the rotary-dial phone needs updating; let’s get a wifi router. Nope, get a smartphone. Update everything.

 

Nail on head. All those decades in existence, but the MEA currently looks amateurish. The chair seems to have contributed quite a lot to that impression, by being so out of touch with real lives and concerns that he doesn't even understand he's on a raft in the middle of the Pacific.