United Kingdom: ME Association news

Good for #ThereForME for taking a stand.
At the moment our best advocate seems to be Sonya, except that’s a conflict of interest with her position. And maybe the same with Charles Shepherd.

 

It's one of the risks of not having a CEO role. Individuals can push in their own favoured directions because no one is steering, and even if people can see a decision is ill-advised, they don't necessarily have the authority to veto it.

 

Agreed, this feels like the smug 'we don't have an expensive CEO' line is coming home to roost.

If I'm being honest, I do actually take a tiny bit of pleasure in seeing this situation. It's entirely self inflicted and the approach that some have commented on here and elsewhere about how complaints/feedback are handled is presumably driving the reaction of #ThereForME. It also shows that what folks have been saying for a while about governance is justified and hope that this is the catalyst to bring about genuine change in the organisation - there's no point Riley stepping down and the same cabal, less him, running things in the same way.

And, AfME shouldn't look on thinking 'phew, it's them today', this should be a reflection point for all ME orgs, I believe. Work with your members, those you represent, don't view them as a hindrance, noise to be silenced by rejecting their feedback, or, closing off a common route to engage.

As I've seen noted on one of the social media platforms, someone commenting that #ThereForME have accomplished so much in so short a period with so little (that sounds somewhat Churchillian). The so-called large/traditional charities need to keep up with the times and one, for sure, has not and it's bitten them on the behind.

 

Spoiler: IT

Thank you

I have a very important and long conversation to have this afternoon. One of many over the course of the next few weeks. The culmination of 11 years of work of taking all the blows. A group effort.

https://www.youtube.com/watch?v=kaIsoGuZTLA

 

A reminder that Riley has a track record of being offensive, condescending and trying to silence views that are not his own. And of showing bloated yet completely misplaced confidence in his own views and vapid pontifications. Valerie Eliot Smith had to file a complaint because of his behaviour:

Link

The complaint was dismissed by the ME Association. And they kept him on, despite his behaviour. They also accepted Sarah Tyson's behaviour.* (Note that she too referred to ME patients as "sensitive"- this is a classic tactic of abusers to justify dismissing their target's criticism of their behaviour for themselves and to encourage it in others.)

At the time I didn't think this guy should be near ME advocacy (or any patient advocacy for that matter):

That opinion still stands.

Given that Riley has been a shaper of the organization for so long (he has been involved and his behaviour accepted for at least 20 years) and what the organization allows, I have little trust in it.


*I coudn't find the response to the letters that were sent to the ME Association re. Tysons behaviour, but IIRC then her behaviour was not properly addressed nor she held accountable.

 

The Open Letter on Google Docs stands as 556 signatures.

Alex was planning to send it at 1200GMT today - but has said he might hang on a bit longer.

If you haven't signed it already but are planning to do so best to do it now.

https://docs.google.com/document/d/10JWitoNxMafyi7KeSO4pjoIpM51PH3bf3z0CWUdYOUw/edit?tab=t.0

or

https://docs.google.com/forms/d/e/1FAIpQLSeeRm06yjKuVJz5LPaQYPePcbQKZlGWPHcAt8_6fkw80-U8mQ/viewform

 

They surely can't ignore knocking-on 600 signatures. Can they..?

 

Has anyone had a copy of the magazine today, with the AGM postal vote slips, full AGM details etc?

 

Thank you for looking it up @Trish

 

596 now.

 

How's this going to pan out then?

One scenario:

the Winter issue of the magazine is "unavoidably delayed" at the printers;

this results in the board of trustees missing the 21 clear days constitutional requirement for notice of an AGM and the sending out of postal ballot slips for voting on any new trustee nominations and any current trustees who are coming up for rotational retirement but are re-standing for election;

certain pages are pulled from the magazine (it's been done before);

pages reprinted to include the stepping down of Neil Riley.

magazine is sent out late with 21 days' notice of revised date for AGM plus AGM materials;

or, I'm told on Twitter that there was reference to the AGM on p71 of the magazine (but I assume this person means the Autumn issue and that this did not include all AGM related materials?)

Can anyone confirm what was included on p71 of the last issue?

 

Alex is keeping the letter open until 4pm GMT today:

https://twitter.com/user/status/1858852117907210596


Alexis @alexis___me

Thank you to the 589 people who have signed our open letter to the ME Association. I will be sending it at 4pm today. You can continue to share and sign and we will send on any additional signatures to them we receive after today.

12:37 PM · Nov 19, 2024

 

Why am I not surprised. I’ve only ever read the recent article and I just knew he’d be the type who would explain to me in depth that”mansplaining” isn’t real.

 

Alexis @alexis___me
Nov 18
The full text of the column from the chairman of the MEA is here: https://docs.google.com/document/d/e/2PACX-1vT88ipljrgIe9MkrBBq_GGT8T7WfKU9rV_Wva7pl1JA2zGle05gRYlYLEtYcDUuKNEwGlq9sYT8z46X/pub… It's condescending, scientifically wrong & undermines the key message of rest helps movement. An open letter in response you can sign if you wish to is here:

Full text of "Animals are made to move":

https://docs.google.com/document/d/...pl1JA2zGle05gRYlYLEtYcDUuKNEwGlq9sYT8z46X/pub

 

Neil Riley also congratulated Barton on behalf of MEA on the 30th anniversary of the founding of the Sussex group.

Do they even need to send each member a printed magazine? Certainly some patients will, either due to sensory problems, technological unfamiliarity or general preference prefer to receive information in this way, but many might be happier with a better online offering. Given that it has taken the online ME patient community around a month to notice this I suspect that the magazine is not widely read. Has MEA thought about polling their members to determine how they might best communicate?

Something else that I noticed a little while ago is that MEA membership numbers seem to be stagnant. I haven't looked for archived reports but if you look at the earliest and latest available accounts currently available on the Charity Commission's website the 2019 report and the 2023 report both say that MEA has "around 5,000 paid-up members". Given the emergence of a great many post-COVID ME/CFS cases I would have expected the number of members to rise.

Some thought needs to go into bringing MEA into the 21st century.

 

Does anyone know if Charles Shepherd has been nominated for any UK honours in the past? Apparently the Cabinet Office don’t like too frequent nominations for the same person, but I wonder if nominating him for an honour now might be a useful accompaniment to pressure on the MEA to reform its governance.

Although I am not a current member so am reticent to advocate for specific radical changes to the MEA, I do feel that the wider ME community, both individuals and organisations, can justifiably recommend him for an honour in the light of his wider ‘services to ME’. If anyone thinks this a topic worth discussing here I would be happy to start a new thread.

 

I think he deserves to be nominated alright. I came across something from a few years ago where it said he often did more 40 hours a week of voluntary work.