How can we improve the quality of ME/CFS research and clinical care?

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 if it's just a few people. I think that each document would need a lead writer who would take charge and would lock down a final version, very much as @Jonathan Edwards does with his papers. We comment on them but he's the final arbiter of what suggestions he takes on board.

 

One thing to do is focus on ME/CFS rather than ME. The new AI search tools should pick up the difference.

 

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 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.

 

An Integrated Academy does not sound much use to research to be honest. The blurb looks like politically correct waffle rather than medicine. It looks as if there is a significant emphasis on 'mental health' which presumably means 'talking therapies'.

 

The ones done recently with David Strain.

 

FOI will not find out what doctors are actually telling students. I think we just assume it is mostly BPS garbage and get on with providing an alternative.

 

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

 

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?

 

It is n't how the system works. I do review quite a few research proposals but by no means all. Nobody can tout for providing a referee service. The whole point of peer review is that you don't do that, otherwise all the wrong people would do it too.

Research is basically set up on a competitive basis. You don't tell people what you plan to do in case they pinch your idea.

In other words, sealioning doesn't go down too well.

The only way to do it is to develop a reputation for being sensible and nowledgeable and your name gets put down as a suggested referee by the decent researchers. Jo Cambridge gets any amount of stuff to review. But for the duff researchers you have to hope funders have got to know that you write decent review reports.

 

Clinical teaching doesn't use those much. Students see patients in the clinic and get told about them by the teacher. They then go and read up. I did used to give a set of lectures for my students but there was no way to cover all disease systematically in the time available.

Not at the moment. If S4ME puts together a good enough set of essays on all major aspects of ME/CFS there would be the option of producing an e-book or hard copy. If the charities saw that we had done a much better job than others they might back it.

Anything might follow from a good set of educational essays once we have done them. Until we have done them I wouldn't bother with worrying about routes of dissemination.

 

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

 

How right you are....... but, one way to counter that, is to try to get someone heading leading the new service *( if we can.....) to counter that threat, as they might have better credentials and a higher research background and authority!!??

We know what we want, but cannot magic suitable 'providers' easily.
The same situation exists across the country, so we can but try to break that mould.