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This would be very useful info but this project is about us doing what we're uniquely qualified to do and our charities apparently aren't: which is to provide science-based information to cut through the bilge that's currently out there and is harming patients in their hundreds of thousands...

Thanks, @Jonathan Edwards, fantastically helpful - can I just ask, is #7 on the list actually an accidental new line and should instead complete the sentence in #6?

Do they, though? Don't they add years in good health rather than just dragging out the poor health?

Yes, the idea is to scope out what we might do in an ideal world and then chose a priority item and take a crack at it so that we can set up a way of working and see how we do.

What do you think about the scope of preventive health measures to help matters? That's part of the proposed strategy, though I don't know if specifics have been made public.

Glad it's done and dusted and that you're OK!

Sounds good - I particularly like the sound of a book. It's easy enough to self-publish books these days.

Would it at least get us lecture slides or handouts (or whatever the 21st-century equivalents are)? But you might be right that it's not worth the effort of finding out. Do you think there's a route to get our resources into medical schools?

Thanks. Here is an AfME article about it with links to the modules (which I haven't looked at yet).

I hope you're alright. That sounds very worrying.

I agree. I think we should pick one priority, as @Jonathan Edwards suggested earlier, form a team, and create the resource. By doing that, we'd work out a means of working, which will be important, because it's not always easy to have a team working on creating a document.

Producing high-quality materials would be a great way to attract more people - and more science-oriented patients and researchers - to the forum where they're being produced. I'm not sure it's best to set up a separate website (but I'm also not sure it's not!).

I've done a lot of editing and the worst case scenario for me is where a load of people have edit access. I don't think that high-quality documents can be written by committee, though certainly people can suggest changes and improvements - but an edit free-for-all would be a terrible thing, even...

Maybe. I was wondering whether the NHS specialist clinics and/or medical schools (if we could ever reach them) would need different language, different formats (e.g. a talking-head video with a big medical expert such as your good self), and maybe deeper backgrounds to counteract the BPS...

We have extremely limited resources in terms of time, people, and energy, and I'd rather see us use our expertise where we see expertise lacking, such as in producing science-based materials of our own. I don't see much benefit coming out of databases and they would take a huge amount of work to...

I'd love to see this.

Is anyone pushing for this?

Ideally, I think we'd have resources for: patients clinicians researchers funders and charities medical schools the NHS specialist centres though some resources might serve several groups. Here are some resources that I think we'd want patients to have: What is ME/CFS? (Symptoms...

New thread here, focused on the list itself (I think that who would volunteer will depend on which item(s) is/are chosen as the priority and can be tackled later). :)

Just bagging this post in case it would be helpful later to collate a list of suggested resource from the thread and park it here at the top. [Edit: Parking @Jonathan Edwards' priority list here, from downthread] 1. What is ME/CFS? (Symptoms, diagnosis) 2. What is meant by PEM and why it is...