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Data. I had a hopeless interaction with the hospital this week (assisted by my advocate) as to why certain things can’t be considered - doesn’t gather data, can’t send us info on usage or effectiveness so who cares if it’s effective, it cant justify itself to the NHS so it’s not used. So stark...

I saw a Broken Battery has posted a shout out for any Dr UK or even consider in Western Europe who could assist with specific eating arrangements. Thee is more info on the go fund me. I don’t want to post much detail here in case it’s breaking the rules as it’s quite specific.

Yet again the NHS is unleashing untested, unscientific “treatments” which most closely resemble the discredited “PACE” trial specifically pointed out as harmful in NG206 NICE guidance 2021.

Fire up the BACME letter! It’s already paying dividends. What a document. Now I’m feeling a Batman 60s tv show kind-of Kapow!

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