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What’s he rehabilitating? I can do everything I used to, except I can’t do it for long or repeatedly. Then I become fatigued. You can’t rehabilitate the fatigue because that’s the presently unknown and incurable ME/CFS. If I want to go swimming, running or weightlifting I could. I shouldn’t...

Don’t speak Spanish. Have moved on now to “looooooooolllllll”

Rehabilitation, Physio, they are like CBT in that at times and where specified some interaction might be needed but basically that’s true in every illness. So can we stop see in them as “headline news” as if they are core to our managment of ME/CFS? They are peripheral, at best.

I also said “boom” and “mic drop “ in my mind as I read! I wondered how bad the BACME guide was, so I went back and read it. It’s really bad and gets much worse the further into it you go.

But this is the problem, it’s in so many people. Western society is all “lazy = bad and healthy, active = good”

At the risk of inviting questions I can’t answer…. (Apologies in advance, at some stage I will produce more info but it’s unlikely to be useful, or scientific, or scaleable etc) I’ve got so much Fitbit and visible data I can’t manage it so I’ve been feeding it to chat GPT. So it thinks it...

The cult of “rigorous scientific evidence” strikes again…

100% this. It happens. It is happening.

<consciously uncouples from body due to repeated poor behaviour> Yeah that feels better. I just need to find a sci-fi film type jar of goop for my brain to live in, balance that on top of my robot hoover and off I go!

I get this after having a few nights of reduced REM sleep. You needed to sleep.

People don’t disbelieve ME/CFS because it’s invisible. They don’t believe what they can see isn’t something else. What it actually looks like “but you can do it sometimes” or “might just be depression” or “you’re an attention seeker” or “you’ve got lazy” or “you’ll be ok if you just….” Because...

Frankly, unless somebody comes along and says we have a VS patient who is actually in fact sat up in bed eating Egg and Chips every day, I’m inclined to believe the info that they are being mistreated at times. Even if they’re not being mistreated all the time. And if Sonya Choudhury is making...

If using cyclazine to tolerate feeding is necessary that’s a big old problem

I assume each ICB has a similar set of documents. I was wondering whether this could be a way for some advocacy groups to push on certain ICBs where there are pwME in hospital currently (thinking of Karen in Hastings and Savannah in Lewisham)

I just had my 20 year-versary

Yeah I am not set up for those at this moment in time sorry, I’ll come back to you when I’ve got it sorted

Here are some I made with a meme generator

I do need to put them somewhere, I don’t like Pinterest but I forget why. I don’t want. 2 instas. Lots are nicked from chronic illness humour.

What I don’t have…technical ability

This is just a random idea but it’s “quick and dirty” one I was able to deploy once in the past. I collect memes about ME in a folder. I can put together a collection of them in minutes. It can give an overview of the challenges we face, the things which affect us, the unseen and unheard...