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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...

I’ve just written one - see below “Stop meddling and back off - you know nothing and you’re not helping”

Also humans can endure terrible neglect, abuse, pain and so on. Look at people who have been held captive in prisons, or kidnapped and chained up for decades being abused daily. Just because people can use some “mind over matter” to force themselves to get through hideous daily pain, punishing...

I won’t be using any app from Elaros.

I hope it’s Botox. My guy has retired.

I assume with a fire it goes one of two ways - crazy superhuman adrenaline ability to escape, or not.