United Kingdom: ME Association news

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.

 

You do need to be a member in order to stand for election to the Board.

Prior to the changes to the Articles in 2005 individuals nominated for trustee elections did not need to have been admitted to membership but were expected to become members following successful election to the Board.

Following the changes in 2005, they did need to be members.

From the current (2014) Articles:

The Make-up of the Board of Directors

21. The Board of directors of the company shall consist of:-

(a) not less than four, nor more than eight persons, elected by individual members; all such persons being current members of the company and whose subscriptions are up to date.​

 

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.

 

From all I have read of the AGM, it just reinforces my view that the MEA is a basket case, a lost cause.

Blame everyone else but themselves and the fact that the other trustees have (as suspected) rowed in behind Riley (one apparently saying his wife didn’t see anything wrong with the article) just says it all really. So far out of touch with reality. Am glad my money is going nowhere near them and if I do go to my local support group in future I will be withholding the donation to the MEA that they ask for attending.

Glad I took a break from all the online stuff over the last week, was not good for my sanity and wastes energy I can ill afford to use.

I take issue with the suggestion of abusive comments online (that old chestnut). Nothing I saw in the various discourse on Twitter at least, was abusive (to take a twist on NR own words, you’d know if it was abusive and, many would likely call it out if it was). Those of us asking for his resignation were dogged, but polite in doing so from what I saw.

But, am eternally grateful to those who have been keeping the pressure on and attended today.

 

Nobody minded Neil’s article, until it went on social media. Apparently.

They are just dinosaurs, and Action For ME are modernising.

 

Agreed, I’ve not been a huge fan of AfME at points, but they are light years head of the MEA right now and appear to be continuing to accelerate away from them. Their AGM was open to all and tackled some of the difficult stuff head on. That said, I hope they have looked on and learned something from this debacle too.

 

"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.

 

So their reaction to the widespread criticism was, we need to use up pwME’s donations to improve our image and hire people for “communications”?

Instead of oh shoot we’re not really representing the people we claim we are, we need a shakeup?

 

Yes the launched”we want to become more accessible” at an AGM that didn’t give the required notice, was difficult for members to access, had the chat turned off and various trustees forgetting to “mute”, lasting 2.5hrs. Not exactly accessible.

 

Current Social Media

https://meassociation.org.uk/mea-team/

Emma Jeffries Communications and Social Media Lead

• In Emma’s early career, she was a qualified staff nurse, however, this career ended due to chronic widespread pain and debilitating fatigue, which was diagnosed as Fibromyalgia. After which, she was later diagnosed with ME/CFS.
• She is the founder of Andover Fibromyalgia & ME Community Group (AFMCG) and has always been active on her AFMCG social media and supported people with ME/CFS and Fibromyalgia in many online health communities.
• Emma joined the ME Association in March 2021 as Social Media Specialist and has taken on the role of overseeing all communications and social media content.

plus Communications Officers:

Rachel (website and social media) Bio on the Meet the Team page.
Kelly (social media and the MEA website) Bio on the Meet the Team page.

Not sure from today's AGM report whether they are intending to recruit an additional two to the communications team or are referring to Rachel and Kelly above, who both joined the team in 2024.

Currently three working on social media but evidently no-one able to be deputed to respond to comments and queries on Twitter and Charles Shepherd responding personally to many comments on Facebook.

 

Window dressing.

 

I don't understand the approach. If something turns into a major discussion point, social media managers could post a boilerplate reply thanking contributors (assuming they weren't abusive) and saying that responses are being collated for discussion—followed later by an official post letting them know what's going to happen and when. The delay can be frustrating when people are hacked off, but at least they don't feel they're being barricaded out, silenced, or gaslit.

 

I'm not sure I even see a lot of value of a charity endlessly discussing stuff on social media. It's not where I want them putting their effort, but perhaps I'm old-fashioned (I don't engage with social media).