United Kingdom: ME Association news

interestingly the charity commission upheld no charges against the former version of The ME association in 2003, according to this
https://www.thirdsector.co.uk/commission-clears-association-mismanagement/article/622079

 

"Charles Shepherd, a longstanding medical advisor to the MEA, contacted the Charity Commission claiming the charity was wasting money and mismanaging operations.

"The MEA had terminated Shepherd's contract (Third Sector, 25 June) after he posted similar allegations on several internet message boards."


Yes, the CC is pretty toothless.

 

https://twitter.com/user/status/1864228909643944235


https://twitter.com/user/status/1864229910308638854


Elisabeth Klaar | Oak Tree Studio
@lammas_leaves

The MEA has not accepted put motion *as a motion* for various reasons to do with timing, format etc which we attempted to sort out behind the scenes in good time. However, they have instead issued a public statement committing to discussing the substance/content of our motion.

 

The procedural/validity issues about the AGM are very, very simple.

The MEA board has failed to comply with their constitutional requirement for at least 21 clear days' notice.
Just as they had done in 2005, which they remedied by rescheduling the EGM meeting.
Which is what they should do now.

 

Is it just me, but it seems a little odd to be so particular about insisting the motion meets all procedural requiremets, but not the AGM.

 

Well if you are in charge and you don’t like the motion, and you don’t care about the validity of the AGM because nobody tells you what to do, it makes sense…

 

Will they be the normal definition of discussion- where it is two way and listening is happening I wonder.

 

Update from those who submitted the motion;

https://twitter.com/user/status/1864319147959566752


https://motionmea.wordpress.com/response-to-me-association-public-statement/

My brain is not really up to processing all that it says, other than suggestiing that more people with ME need to get involved or words to that effect and doesn't go into unconstitutional meeting (or whatever the appropriate wording is).

 

Ooooof. we hope the MEA makes collaborating more straightforward in the future. The MeA still needs to demonstrate to us they can make reasonable adjustments in its communication with the community it serves.

 

An important point however.

Something that makes our lives impossible bit by bit is lack of reasonable adjustments (and sometimes it feels like when you raise any requests the opposite happens) in so much that we have to come into contact with just to get by in life. Underneath it all for us needs to be a genuine wish or willingness to not exclude / work with otherwise we can end up being given a right old merry-go-round exhausting us whilst people 'pretend they don't understand' as we get worn down and both can't access what we needed and end up eroded health-wise for even trying. And it is so easy at the moment for those who choose to do that rather than to find a win-win.

It's on top of our disability a massive disability ladelled by society and encouraged I think by the incitement from eg some bps individuals and their tweets, articles and language which permits seeing us as undeserving. It just cuts us out of society or access to things that we need, or even them being developed to be accessible/a path forward.

Something completely different needs to be modelled by those whose main existence is supposed to be in our name or apparently in the name of what genuinely helps otherwise it is modelling something else about how we can be played and kept out of speaking for our own bodies. And that last part of that line I think needs its own term in itself because recent events are really making me realise how intrusive and intimate a thing what is going on is and there needs to very much be a term for those who think in such a way or permit others to do so without calling it out.

 

Yes they don’t generally communicate in a way which is adapted to us.
Far, far worse that they’ve been causing a fandango and draining the energy of two pwME who are members who wanted to put forward a motion at the AGM.

They are just disgraceful.

 

https://twitter.com/user/status/1864386311211176292



Alexis @alexis___me

Two weeks later & no response to our open letter from over 1000 supporters of the ME Association, just another editorial unprofessionally joking about complaints. Our follow up letter & petition is here calling for accountability & action from the Board https://change.org/p/me-association-chair-neil-riley-must-step-down

 

Yep. Offering reasonable adjustments includes not insisting people get in touch to request them every time, especially when particular impairments or difficulties are known to be common in the community an organisation serves.

For people with ME/CFS, remote access to meetings should be offered as standard, and people entitled to attend should be able to do so online by using a passcode or membership number. Information should be available in standard format, large text, and in a version without distracting colours or pictures, and people should be able to access it simply by choosing which version of a file to download. Et cetera.

 

Yes. It's really obvious to watch when you know how ME works. And feels really inappropriate

I don't know whether they are aware or care that as well as watching people being treated very wrongly, I take this very personally as a template for how pwme should be treated and those doing it be allowed to.

 

I haven’t been following this chat, but saw a change.org petition shared on bluesky asking for Riley to step down. Incase it hasn’t beennshared yet, here it is:
https://www.change.org/p/me-associa...n=psf_combo_share_initial&utm_medium=copylink

 

Three posts upthread. I signed it and shared. Alex who organised the 1000+ open letter is sharing it on Twitter/X.

The shorter link is: https://www.change.org/p/me-association-chair-neil-riley-must-step-down?

 

They should have put instructions for accessing the meeting on their website. I emailed yesterday to enquire whether non members can observe via video. Given there are now just two working days left before Monday, I very much doubt I'll receive a response. The office will likely have been overwhelmed with enquires about the meeting. There was nothing in the magazine notice about whether the wider community can observe, as AfME permitted, or reasonable adjustments. They did not even put the agenda in the magazine.

I would not trust this board to run a whelk stall.

 

I think they are also guilty (my opinion) of the “x person has ME and they’re ok with it” as if one person who has ME is the authority on all things ME to everyone.

I’m always aware that my function is totally different than that of people who are severe.

 

Update on video access to the MEA's AGM next Monday:

It has been clarified that MEA will not be permitting non members to observe the proceedings via video.

On Tuesday, I emailed MEA's head office to enquire whether non members could register to observe the proceedings via video link.

Having received no response and with only two working days left before the meeting, I followed up with a phone call to head office this morning.

I was told that only members will be able to access the meeting via video. I expressed disappointment that whilst AfME had welcomed non members as observers to their AGM the MEA does not. I was told that my feedback would be passed on.

I mentioned that some members who have emailed requesting the link to participate via video had not received a response.

I was told that members would be receiving the link today.

 

Last year, on 4 December, MEA published a pre 2023 AGM Chairman's statement:

https://meassociation.org.uk/2023/12/the-me-association-annual-general-meeting-chairmans-statement/

Doesn't look as though he intends to publish one this year, other than the brief AGM related statement issued on 3 December.