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Note: The committee has made an announcement about the project discussed in this thread: The Fact Sheet Project Members can contribute by being part of the writing teams for two initial topics, and also by contributing information and opinions on the fact sheet development threads for each...

You're right! I'll set one up. :thumbup:

We haven't given much thought yet on this thread to your excellent idea of forming a group to essentially peer-review research proposals. Given recent concerns about how the ME Association handles money, and given that they say that they have supported or intend to support almost every research...

Do we know what the medical schools are actually teaching? I'm wondering if there's the potential to use FOI to find out and to tackle it by critically appraising it and publishing a paper on it...

Isn't this the point at which we wish our government had closed the borders when Covid was breaking out in China?

Are there government e-modules about ME/CFS? I've never heard of these.

We've talked about replacing existing charity resources with better ones. I think it's also worth us thinking about what resources we would produce if the charities had never existed and there were no resources and we were starting from scratch, as the only source of information to PwME and to...

@Jonathan Edwards - I don't understand enough about how the NHS works or should work to be a useful member of the public here! I suspect I'm not alone. What would a rational system or solution look like, and is anyone running a campaign to promote it that people could ask their MPs to support?

I've done some searches recently that have led me to MEpedia (and have been very disappointed with what I've found) but this usefully raises the issue of how we would get our own output coming up tops on web searches. I am clueless about this.

Same here, I never notice forums that aren't discussion forums because I only navigate by hitting the 'recent posts' button. But equally, I'd never visit that home page unless I had a reason. But a home page that links to the resources and the forum separately would be good, given that our main...

Why? (Again, I'm a tech dinosaur!) :)

Thanks - that Cracked Egg Studios site looks much better. I don't really understand the Wiki concept, though (tech dinosaur) and wonder if it would be better simply to keep things here on S4ME. The advantages that you list also apply to posting on a dedicated forum here, and it might be better...

Not your fault, obviously, @forestglip, but that VaultWiki page looks very cheap and tacky! Whatever we use, I think it's important that it looks as professional as possible, otherwise we're going to undermine the credibility of our materials. Design really sends a message.

Brilliant! Shall we start by making a list of this stuff to prioritise? (My favourite thing is to make a big list before narrowing in on the best project but I'm off to bed now!). I'm really excited about this. I think this is what the forum was made for. We could make a really good...

Can we come up with a version of this project in which publishing the outputs doesn't depend on having a website in addition to the forum? As you say, creating a website with the forum embedded would be a major undertaking and would depend on people who are already overstretched. As an example...

It might be good to do a list of the things we'd like to have and then prioritise (properly prioritise, by starting with just one project, as you say).

We've also talked about doing a proper hospital passport. I think there could be quite a few quick(ish) wins that would consist of short, but well-executed documents.

I think that web pages for resources, if not a website, attached to the forum would be great and could be done incrementally rather than all of a bang and needing charitable status and fundraising. I think the important thing is to list projects we think are worthwhile and prioritise them as a...

I'm in my sixties and I think it's too hard to see what effects an AI revolution might have on medical discovery, or how PwME might benefit from new discoveries from other diseases. Maybe there'll be a cure in my lifetime - I hope at least there'll be an even partially effective treatment, and a...

That could be a good sign, if we can't get institutional support. I suspect AfME might have some materials that we might not approve of either. I don't think we can replace the MEA (they do a lot of other things apart from providing educational materials) but I'd far rather see a thinktank of...