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I stopped posting here for a few reasons, but this might be worth logging in its own thread. I will be having a phaeochromocytoma removed soon. These adrenal tumours are usually diagnosed through excessive catecholamines in 24 urine collection, or through excessive metabolites of those...

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 from a group of vested medical interests, but whose disability doesn’t prevent activism, and who therefore regularly win battles over funding and public...

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 how to balance targeted narratives with APPG efforts, which by their nature are consensual, is an interesting one. I’m not a public affairs person, but...

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 get across could be framed to suit specific narratives. Most patient advocacy is pro-NHS and anti-austerity by default, so perhaps it misses the...

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 Association doing promoting it with a “come to sunny Nottingham!” puff piece? I don’t know much about the ME Association, but several of their...

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 only really noticed mild energy depletion before that. Really not sure this is a great idea.

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 providing duff information on healthcare would upset the editorial leads at the HQ in Kings Place.

^ 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 so often to see if it does anything exciting. Sample of one, but I’ll remember to ask whether the size or any other characteristics of the gland...

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 assesses benefits. Can’t really ask for more than that. I have no idea what possible use an ME/CFS care plan would be.

It’s perhaps not unhelpful if the concept of functionality gets this (at face value, offensive and infuriating) notion “attention dependence” tagged on, as it takes the lived experience of chronic illness even further away from the definition. However, as there are no autophenomological states...

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 sustains me over a busy workday, but I’ve come to realise that will always mandate a day soon in bed feeling wretched. A relative who had ME in her 20s...

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 define and articulate the sensations of illness, but that’s more a language problem than a sign of symptomatic diversity. It just feels unlikely that...

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 reasonably quickly, because I had private health insurance to chuck at it. Probably would have been a decade on the NHS. Giving up entails a...

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 description for a political movement which has stopped tweeting for at least a year. There are a lot of MPs signed up because they offered a sort of...

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 remember assenting to email from them, as I was on a ton of continuity Remain mailing lists, so I’m possibly included in that 150k, but can’t find any...

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) getting the bit between her teeth on ME is really positive.

Functional in the context of cognition makes even less sense, though. Until every single neural process is mapped, exhaustively, all cognitive impairments are essentially functional.