Shame that Sci Hub isn’t doing recent articles any more. Is there a control group in the shape of a group of patients who are also under threat...
No point in 1) in my seat, hence the underlying idea. I’ve pursued 2) with a note to ME Action.
I’m just thinking about what the community could do. I’d like to be more involved, but I’m not planning to do anything solo. The question about...
That’s perfect. Hard-hitting and digestible. I’ve been thinking a lot recently about political messaging, and the how the key messages we want to...
So, if there’s a strong consensus on this board that recruiting pwME into exercise stress tests is a Very Bad Idea, what the blazes is the ME...
Exercise stress tests aren’t for the mild or moderate, either. It was one of those that gave me my first proper experience of PEM crashing. I’d...
A zinger to Kath Viner would probably have more impact. Australia is a tag on the Guardian CMS rather than a completely separate business unit and...
^ This, a thousand times.
I have occasional calls* with an endocrinologist who has been forced by NICE guidance to scan and review a small nodule on my adrenal gland every...
My GP said firmly that ME was a physical illness, just a mysterious one, and he offered to vouch for my disability credentials to anyone who...
It’s perhaps not unhelpful if the concept of functionality gets this (at face value, offensive and infuriating) notion “attention dependence”...
But doesn’t it always signal payback to come? I get brief bursts of energy from online meetings and calls, and the buzz from those sometimes...
The thing that strikes me about the ME patient community is the extraordinary similarity of the experiences we have: there’s a shared struggle to...
Do the mitochondrial or metabolic diagnoses come with any more hope or prospect of a cure?
I gave up once cardiologists, a neurologist and a rheumatologist had all done all the tests that occurred to them, to no avail. This all happened...
Best evidence is that it is winding down or dormant. “Floundering” suggests a lack of direction but still some activity, and would be too kind a...
They are supposedly a network of 150,000 people and yet in the 2019 general election, they crowdfunded £150k. A measly quid each. I vagueLy...
This is great - shadow minister for disabled people (or for civil society - shadow positions can be a little vague, but she’s DWP facing anyway)...
Functional in the context of cognition makes even less sense, though. Until every single neural process is mapped, exhaustively, all cognitive...
Prosperity is presumably what motivates Chellamuthu, but it was definitely a good idea to act in the interests of posterity.
Separate names with a comma.
