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

[Sasha]

Also, one possible best of both worlds approach that keeps high quality content while allowing anyone to contribute could be making a third area (apart from official and draft which are only editable by a few people) where anyone can edit. Like draft pages, they aren't displayed prominently anywhere, but anyone can make their idea into a page without waiting for someone else to put it together. When they think it's pretty good, they nominate it to become a draft page where the few with edit permission there make sure it is high quality and maybe make some final edits before making it an official page. Spreads the workload a bit and allows more people to feel directly engaged.

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.

 

[Jonathan Edwards]

but this usefully raises the issue of how we would get our own output coming up tops on web searches.

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

 

[Sasha]

Maybe a compromise between waiting for some professional looking section to be added to the site, and just using threads as places to post resources, would be just setting up a Wordpress site. It could be set up pretty quickly and wouldn't require any technological upgrades to the S4ME server (although it'd be on a different domain and look separate from S4ME).

But that could be quickly spun up as a place to work on these resources in the meantime as a proof of concept.

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!).

 

[Trish]

I think we should go for quality rather than quantity. Focus on central issues such as defining PEM including differentiating it from other forms of exertion induced symptoms, explaining pacing and common strategies and problems, and why variations of GET such as pacing up are unevidenced and potentially harmful.
I don't think it would be a good idea to have lots of people picking topic and writing drafts at the same time, as has happened in the early enthusiastic days of MEPedia, resulting in many pages of unevidenced stuff, making the whole site unreliable.

 

[Sasha]

I think we should go for quality rather than quantity. Focus on central issues such as defining PEM including differentiating it from other forms of exertion induced symptoms, explaining pacing and common strategies and problems, and why variations of GET such as pacing up are unevidenced and potentially harmful.
I don't think it would be a good idea to have lots of people picking topic and writing drafts at the same time, as has happened in the early enthusiastic days of MEPedia, resulting in many pages of unevidenced stuff, making the whole site unreliable.

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.

 

[Jonathan Edwards]

There is the Integrated Academy within the UoS, linked with our Integrated Care Service, the Integrated Academy UoS.

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'.

 

[Jonathan Edwards]

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

The ones done recently with David Strain.

 

[Jonathan Edwards]

Do we know what the medical schools are actually teaching? I'm wondering if there's the potential to use FOI to find out

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.

 

[Sasha]

The ones done recently with David Strain.

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

 

[Sasha]

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.

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?

 

[Jonathan Edwards]

Do you or @Jonathan Edwards or anyone else see a way to take this forward in time to potentially stop the MEA wasting that £1m?

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.

 

[Jonathan Edwards]

Would it at least get us lecture slides or handouts (or whatever the 21st-century equivalents are)?

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.

Do you think there's a route to get our resources into medical schools?

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.

 

[Sasha]

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.

 

[Suffolkres]

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'.

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.