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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.

Maybe he is needed on the board for votes or something.

Oh so the motion was proposed for inclusion at the AGM before Neil Riley wrote his offensive article? Is this all a kickback from members wanting the MEA to play by the rules? Can the NCVO help in any way?

Yes, and they’re more mature than him.

I think it would still be a subjective thing - you’re asking people with cognitive dysfunction to self report their cognitive dysfunction and link it to their heart rate variability? But I’m not a scientist. Based on absolutely no evidence and just my opinion (!) I don’t think it’s a...

What was their motion, please? Does anyone know.

They’re called the ME Association, they have a charitable aim to provide information and support. If they only deal in members, not pwME, they need to embargo their magazines and deal more effectively with members so that they don’t feel they must publicly discuss concerns about how the AGM is...

I like visible, people seem to really fixate on their daily score and it’s a bit prominent so you can’t have see why. Then there is all this next step they want to do - predict a crash. I absolutely don’t see the point of pursuing that. Sometimes there’s a trauma. Sometimes there’s no...