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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.

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.

Nobody minded Neil’s article, until it went on social media. Apparently. They are just dinosaurs, and Action For ME are modernising.

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.

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’s a bit antiquated to be honest, these days you’d just have grievance for employees and complaints for everyone else.

It is clarifying that this is a grievance procedure for members (and/or their careers)- and not to be confused with the grievance procedure for employees. Presumably non- staff and non- members would follow an organisation’s complaints procedure?

To be fair it’s my data they used in this study, I’ve just realised.

My last physio said that if I can’t sit up straight with my feet on the floor, I should stay in bed lying down all day. Otherwise I should sit upright in a chair. Lounging, reclining and sagging were all no-no. I’d go mad in bed all day (and think of the sleep hygiene I’m supposed to be doing!)

Interims delivery plan due to be published in March.

365 signatures so far on the petition for Neil Riley to step down as MEA chair

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.

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.

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.

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…

I would imagine the two advocates are acting professionally in public, Neil has been caught out telling others that the advocates knew and were ok with their motion not being included. The advocates were not aware and so are still of the understanding their motion (proposed in due time and...

I wonder what pushback he got when he was dismissive of Cochrane (in his I :heart: ME phase)

Yes it chimed with a lot of half-baked ideas I had, but hadn’t been able to think through, let alone read up on. Good to know my paternalism antenna is working as it should.

Fascinating thank you!

I mean that maybe the balance of the board needs a voter like CS.