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How many names are on that petition now :bored: 1410 it seems

If we can rename the pertinent documents after cartoon characters, and set out which is which, and then just explain that Bugs Bunny was on the website until 2014 then Donald Duck was on the website….and Riley said they follow Bugs Bunny but that’s wrong because… then I could probably follow...

The whole behaviour about this is “notable”. need to look at the code of conduct

Well I guess the only way to settle this is to ask the Charity Commission to see what their records show. might be worth doing some archiving of webpages too. Also a look for the old webpage on the way back machine?

Pete W was sent the statement personally to his inbox. He hasn’t yet had time to process it. What struck him was that given the decades of harms from treatments, he’s not aware of the MeA ever talking about taking legal action against the perpetrators of that harm. He finds it ironic the first...

Yup ah I see it is trustees with IT and Campaigning skills who were paid.m

I’m going to assume one of the two trustees named on social media as accepting a payment has the initials NR? I have no opinion or knowledge of the payments or the accusations outside of the posts above, I’m not taking any view. I’m also going to posit that if you don’t put the right documents...

You can have Botox like Bethenny Frankel, her entire jawline shape has changed https://www.etonline.com/news/189037_bethenny_frankel_explains_why_her_face_shape_changed https://www.cosmeticskinclinic.com/blog/masseter-botox-near-me-london-bucks-teeth-grinding-face-slimming-botox/

Is the MEA going to put its hand in its pockets full of stagnant cash?

I find it very odd to see a card representing a woman of colour. That’s the first reference to people of colour I’ve ever seen from the MEA (I do look). That’s an awful lot of hair to look after. Also, “seasons greetings, don’t forget you’ll be feeling rubbish” just do a non-denominational...

Scottish for “dead”

I was just reading about NICE refusing to recommend a drug as it wasn’t good value for money for the taxpayer. How the heck are the current ME NHS services value for money for the taxpayer? I’m sure PROMS will tell us.

Yes, it’s a small point but an important one. Especially now there is some public awareness of ME and lack of services. The public would assume that if a service exists, it’s like other diseases like MS, Cancer etc that you’re under the care of a hospital. They absolutely do not think that...

And that the services which do exist are at best a short-term intervention.Once you’ve done their pacing course you’re discharged back to be the GP’s problem. I remember explaining this to someone with MS who was shocked I didn’t go to see a consultant every year for a check-up. Well, not just...

Yes I think this is important. I’d like to see a dramatisation or under cover film of”what actually happens” Even a flow chart (excuses map) “discuss your care and support plan” > don’t have one > produced by MECFS service > cannot access service as do not provide services to severe ME “try...

I think the document tries to pinpoint a role who has responsibility for the patient, more than what treatment the patient should receive. They don’t want to put in writing that they should use a 5% incline for feeding, for example. It’s like they can’t say what to do, but a couple of special...

Sorry Dave, it’s the final delivery plan now, not the interim one, I guess Andrew wrote the letter so long ago that it’s changed since?

Ah yes! They are under no obligation to act. They can reply to say we’re taking no action. I stand corrected.

Not sure where to put this, but the question and answer in parliament was about a final delivery plan for ME due to be delivered in March 2025. we’ve always heard of an interim delivery plan. Do we think this is a simple error or is the plan now going to be final and complete? Attached...

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