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Am I seeing dodgy where there is none? Karen who is Ren who is H4ME which sounds like S4ME more than it sounds like the MEA

Ah the overachiever “false equivalence” Do you want to be a lazy person who did nothing before you got ME, in which case maybe you’re just even more lazy than before, and your problem is laziness. Or do you want to make it known you were previously very capable doing work/study, exercise...

Are they all Russell Fleming? Is he the manager of research who reports to head of research, as well as being a Co-author of the research undertaken, perhaps?

I would say I was better on Mounjaro than Wegovy.

I hate this delusion. I don’t even have endo (well I might, nobody has ever looked into it properly) but yeah having regular pain which takes your breath away, the sort of pain which you would call am ambulance for if you didn’t know what was causing it, yet you generally keep quiet about, hide...

That’s actually what BACME are doing! In, out, in, out, pacing up isn’t GET, shake it all about!

Shall we set up “Support ME” next?

I don’t think we will ever see an “ME sanatorium” type of ward. I think at best it will be a special individual room a bit further from the noise, with blackout curtains and warning signs on the door, with tightly-regulated entry overseen by some sort of medic in charge/controller. It will...

I had the experience of two ME clinic referrals post-Covid. One required in-person attendance (including for bloods and urine samples) one I saw online only. My first thoughts on a service is that there are fairly standard things to be checked, could these be agreed upon (am guessing bloods...

Funnily enough I have been thinking about how HCP’s compare to frontline customer service workers. This is because I’m always shocked at how they behave so badly (I would never speak to a customer/client/service user the way they do, I’d be out of a job too!) I think it’s because they don’t...

Why do they always have a sibling with ME/CFS? the psychologists would almost be useful for exploring that.

Funny sort of ME where you don’t get PEM

pwME

It’s like we have to set up MacMillan and pay for Mac Nurses

They just need to get there.

There just isn’t any other illness where the cut off for hospital bed, consultant oversight or any clinic review/management ends as you get very sick.

I know you know this but where is the sense of urgency? Lives are at risk.

Are we the only special little flowers who can’t be told we may face a life of disability? I’m pretty sure if you’re unlucky enough to get a cancer or MND or MS they let you know it’s going to affect and maybe shorten your life. Why do we have to think about other things and pretend it will...

So the MEA gave a grant to this project. Did that grant pay Russell, the MEA employee, to work with the two NHS employees to create an assessment tool for the NHS to use? Presumably it’s all good because Tyson and Fleming have ME and therefore represent all of us with the illness. You...

Oh wow yes that is something that’s needed. I imagine there’s similar scenarios (not necessarily health) say for example if you’re wrongly convicted, or wrongly identified as a bad person on social media or the press. There are loads of scenarios where the majority of society think you’re a...