Search results

Thanks, everyone! Some fascinating and insightful posts straight out of the gate, and I'm amazed I didn't know how bad the diagnosis issue was. Keep 'em coming, folks! :thumbup:

Just bagging this post in case I want to do a thread summary later...

Here's why I was asking about membership! :)

There are an estimated 250,000 PwME in the UK, not counting the influx from Covid, and yet only about 20,000 joined DecodeME (a low-effort, patient-friendly, crucial study), our two main charities probably have a total of about only about 10,000 members/supporters (the MEA has 5,000 so I'm...

Thanks, @Peter Trewhitt and @Nightsong! I had a look at AfME's latest annual report and couldn't find how many members/subscribers/supporters they had.

I was surprised not to be able to find this info on the Charity Commission website when I looked just now.

Can someone remind me how many members the MEA has, please? I know it's been mentioned upstream but I can't find it. Do we know how many members or supporters AfME has (does it have members, or just donors?)? Thanks! :)

But how would we know if we needed one?

Thanks, @obeat - that looks like an excellent list. I'm sorry it took you 10 months to recover from a previous surgery and hope this list helped in 2021. Did you find that the hospital staff understood what orthostatic intolerance was? I find I get a lot of blank looks and have to explain it...

BTW, when I said I was holding my horses, I didn't mean that everyone else had to! Please do comment on priorities, process etc., especially if you haven't done so already...

Thanks, @Trish, that's entirely reasonable! I'll link upstream to your post. Also entirely reasonable. I will hold my horses! :)

That seems to be the consensus (as I said in my post to @Ash above, I didn't represent that consensus accurately in my summary!). I think we need a lead writer at this stage, though, so that they can start and run that thread - would you agree? And yes, I think self-nomination after the two...

Thanks for making me look at this again! I've presented this as an option but looking now at how many 'Likes' Trish's post on this and how many mine didn't, I don't think I've represented the consensus (sorry, @Trish!). So let's go with it, I think, unless the lead writer has a massive objection.

Thank you, @Jonathan Edwards, much appreciated!

Prospective lead-writers! Would you like to give us a sense of your background that would make you a good fit for the role? (I will edit this into my post above - should have thought of this earlier!).

So sorry, @JemPD! We've all been there (and a lot of us are there right now). But I think this project will still be going by May and that there'll still be plenty of ways to contribute. Thanks again to @Nightsong for speaking up so powerfully for the need to do this. It's been inspirational!

Thanks for the great discussion so far, everybody! We've only been discussing this since yesterday morning but we've had lots of great contributions from more than twenty people and have made a lot of progress. Here's where I think we are: We have a priority order from @Jonathan Edwards that...

Would it be better to pause the detailed discussion of PEM and other content until we start the relevant documents? This is the sort of input that would be very useful.

I can see the value of pulling in wider thoughts from the forum ahead of drafting but if we're doing these documents sequentially (which might be wise, given that we might have a very limited pool of people who would be actually working on them) then adding a week or two would slow things down a...

I'm all in favour of this list! People may vary on what order the priorities should go but I don't think it matters because I think we'll be knocking these short items out fairly quickly, once we get going. I'd still like to pursue the hospital passport thing but will start a thread on it at a...