United Kingdom: ME Association governance issues

That was certainly my experience when trying to communicate with him about accessing the relevant minutes.

 

We’ve all got ME, sometimes the brain doesn’t brain. If anyone can understand that, it’s us. A simple admission of making an error is fine. It’s the behaviours that caused the biggest problem.

 

If 'there had been no changes to the substance of those "regulated clauses"' why had they put out a Resolution for specific changes to articles 24 and 28 in 2013?

A great deal of the wording of the entire Articles had been redrafted from version 2007 to version 2013 because of the adoption of the major part of the "new model form". But the Resolutions included "specific changes" to clauses 24 and 28.

If those changes were not "changes to the substance" why would have they have needed to have been specified and voted on? But then nothing Mr Riley writes makes much sense.

 

Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency

 

is it possible to post more information (which it indicates is on page 10)?

fingers crossed this is the beginning of something that I agree is needed

 

I can’t as I’m not a member and this was just posted as an excerpt for wider access and is presumably for members only but maybe other people can share.

 

It's a shame they haven't publicised it more widely, as there could be a sizeable number of severely affected people who're not MEA members because they don't feel represented.

 

More here: https://twitter.com/user/status/1899142222022344721

 

For posterity - screen grab

 

The MEA has commissioned a membership survey as part of a governance review, members are being sent the following email with a link to undertake the survey online:

I have not looked at the survey yet.

 

I was wondering if we might want to comment collectively as S4ME, but had originally intended to do the survey as a member first and find out a bit more about what they are looking at before raising the suggestion.

(Added - my copy of ME Essential Magazine has arrived as well, so I will have a look at what it has relevant to this review.)

 

It speaks volumes that they've not taken the opportunity to ask why many of us are no longer members, or never were.
The questionnaire just stops if you say you aren't a member - it could have had a different set of questions, but, no, we're the MEA, we don't want to hear from those who don't drink our kool aid

 

Absolutely. They don't seem to want the wrong sort of members.

 

I've done the survey.

To be fair to the MEA it has outsourced the governance review to an entirely independent company so there seems a desire to do it right (and probably an awareness they need to be seen to be doing it right). The survey seemed whilst not perfect reasonably comprehensive and well constructed to me with clear sections and plenty of free form text boxes at each stage to allow for member verbatim.

In the same magazine issue it has advertised for severe PwME to apply to go on a member panel which was something suggested at the AGM which it appears to be taking on board.

My impression is that the strong feedback definitely landed and the organisation is making efforts to change and improve itself.

 

I’ve done a few external reviews myself, and it’s really a mixed bag. You can easily find someone to report whatever you want to report, or that will at least let you influence what they look at or how the results are presented. But if the owner of the project wants it done right, that’s absolutely achievable.