Broken Battery Updates

Researchers, scientists and patients gathered in Winchester for an ME/CFS Alliance event on the future of research into ME (MYALGIC ENCEPHALOMYELITIS) and long COVID.In this report from BBC South Today broadcast on 5 March 2026, Chris Ponting discusses findings from the DecodeME study, while patients describe living with the condition and their frustration at the lack of further government funding for research.Broadcast: 5th March 2026

 
Last edited:
Very powerful video. My heart goes out to Samuel and his mother. But there is a lot to take from it that is bigger than how awful and tragic it is. I think the point about wanting people to hear the story is important in itself because there is that thing of respect and what people can do as a minimum to at least look at and hear someone's voice and witness but also know about that person as they want but also should be known (who they are and the full picture of things), even if they couldn't change what happened.

So much to think about/discuss regarding what the doctor said.

I want to share this, but a big question that is perhaps for a thread of its own or applying as a question to other similar things is how do I get those who don't have ME/CFS (and again we can't assume even all pwme will want to) to watch it.

As a minimum I think about what line I might want to put with it - obviously it needs a trigger warning but it is more than that (which I'd like to feel I could nudge people into realising before they watch). And I think does a very good job of getting across what the illness is in the sense of those who perhaps misunderstand it, and the situation (which in Austria is that there are some doctors who recognise it and treat but not enough).

And then thinking of the specific cultural context (UK) and misinformation others might have as assumptions, how people are 'feeling right now' impacting what they watch and how they take it in, and then the different individuals (which given it is social media would need to be people I know, and I'm very aware it isn't the set-in-ways bps-ers or those with conflicts of interests as their business relies on wellness-therapies etc) I'd want to really hear it and hear certain messages from it.
 
Last edited:
I find the video quite disturbing. I don't think the physician has a good grasp of ME/CFS.
Why was assisted suicide allowed? I cannot see the justification in the circumstances.
Who knows if the diagnosis was even valid?
I think it is also troubling to be discussing individual cases. Perhaps I should say that I am not at all sure that this sends out a useful message. We really do not know enough to be sure.
 
What do you mean by that?


—-
Agree with the rest of your point though.

I had to read back, it was a tricky post for other reasons so didn't remember all bits. I'm thinking you mean this bit:

and the situation (which in Austria is that there are some doctors who recognise it and treat but not enough)

which was just a loose summarising from what doctor said in video (noting not all will watch) saying there are some doctors there who acknowledge/recognise (?)/treat pwme - I see what you mean though as he didn't give details and I just assumed it means 'doing what they can' and I don't know what was offered as 'treat' could I guess even according to Nice guidelines include if someone had a bout of insomnia and certain sleeping aids work better for pwme than assuming it is FND or functional or whatever the alternatives are if it is someone who 'doesn't treat ME/CFS'
 
Back
Top Bottom