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i think at some point the medical community has to wake up and realise that once an initial infection is gone, even from 'trivial' pathogens and viruses, that's not the end of the story....

I also had physical symptoms before any cognitive symptoms. And IBS many years before that.

I have a neuro appointment next week because the past year I've had some pretty horrible 'neuro' symptoms including ongoing tinnitus and vision issues. I worry that the consultant may push an FND diagnosis. We all know this is the flavour of the month. There is of course overlap between my...

thanks for this info!

talking of jokes: https://en.wikipedia.org/wiki/Grievance_Studies_affair

this stuff is all the rage in humanities departments. they call it ethnographic research or something. it's an absolute travesty that millions is being spent on stuff like this. follow New Real Peer Review on Twitter to see them call out this crap. you can literally get a phd now by writing a...

Thank you. I have been active on the FB group. It's a good resource.

I was wondering if anyone would like to share their response to this question from a successful UC50 (or ESA50) application, or has a template for the response. Failing that, are there any good resources for answering this question? Primarily, I am interested in what to include here, the level...

I think this is a good idea.

For me, tinnitus came as one of my first symptoms when I first became unwell in April 2012 (probably not M.E. back then). I have not had one second of silence since, and although you do learn to cope it is a bloody nightmare.

I see Tom Kindlon's submission has a nice table format. I have asked if he can lend me a template!

I am putting together a submission for one of the registered stakeholders. Does anyone know if there is a template which we can work from for the document submission?

BPS lot on display in the basement.

That's true. There is unfortunately still a stigma RE the ME 'brand'. I remember a story in a local newspaper about a volunteer who raised only £10 when collecting on the street.

What I'm saying is I have absolutely no idea how much return you would see from employing one more fundraising staff member. It must exceed the salary/costs but I imagine it is of the same order of magnitude. There's no real way of quantifying this because everyone works as a team. The type of...

This is something I too have wondered about. What would be interesting would be to somehow get a cost–benefit analysis of fundraising activity. You could go the other way and ask: is 20-25 grand a year (after costs, pension?) worth it for a small charity?

Im 32 and it seems my record goes back to 2011 (not sure why only then). I assume that's the time electronic records started to be used more widely. The law is now that they must provide you access for free. Production of new material (e.g., letters) and printing may be charged.

well it seems you have what I expected to have - namely GP notes from consultations.

Luckily, all I had to do was email my surgery's reception a Subject Access Request. A day later my Patient Access portal had new info that was previously hidden. Unfortunately it's not my full record!

So all the notes the GP makes in a consultation or after, has anyone seen that in their record? My 'documents' simply comprise scans of correspondence between my GP and other departments / consultants in hospitals.