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At the most basic level, I was shocked at how many authorities ticked not applicable, as though the care of people with ME wasn't their responsibility. More generally, where there are ME/CFS or LC clinics they seem so pleased with themselves. If you strip out the harmful stuff, the harmful...

Thanks, Andy.

i haven't read this properly yet so I'm maybe getting it wrong - but is subtyping based on the assumption that respondents don't have certain conditions (whether they are truly comorbidities or intrinsic parts of ME) if they don't have a formal diagnosis. I have the symptoms of PoTS, MCAS, IBS...

I started yesterday, but have paused to consider whether I want to allow access to my medical records. I have a lot of trust in the DecodeME team, so it's not about that. I'm just worried about what's in my medical records. I've not been treated as badly some, but I have been gaslit, and there...

Another worrying aspect is that they want to dive in early in the disease progression with their exercise/CBT research. At the very point where people have a reasonable chance of recovery, they'll get their hands on them to ensure life-long disability.

Like Kitty, I just can't make myself read through my assessment. I find it too distressing. My PIP decision was both enhanced for 10 years, so I was very happy with that, but I saw that I had no points for "preparing for a journey" which I'd talked a lot about. After seeing that I didn't read...