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

[Suffolkres]

But that's not all that matters. There are a great many good ideas (and refutations of bad ones) that bubble up from S4ME but never otherwise see the light of day that have nothing to do with field-defining experimental results. So many groups are operating with fundamentally different, often very muddled, understandings of what ME/CFS is and is not. There are few good outcome measures (only recently perhaps FUNCAP for severity). There is no good set of patient-facing resources: many people said the MEA's were reliable but they are clearly not.

Agree that bad science cannot entirely be suppressed - I wasn't thinking of trying to suppress psychosomatics - but we have a situation where even well-meaning researchers are getting things badly wrong. We also have a situation where the resources that are available to patients are so very poor that using them will undermine their own position with their own doctors: if patients repeat the material put out by many ME organisations to their doctors they will just be assumed to be somatising. Better-quality materials that don't undermine the patients that try to use them would be a very good start.


There is also a lot of research that could have been very useful to us but for, say, poor selection criteria, or use of poor outcome measures (like the CFQ with its many flaws such as asking patients to compare their experiences to an undefined prior timepoint). Things that many people here could've pointed out straight away.

There are things that a group with institutional support and backing can do that the same people without those structures and support cannot (hence the "think tank" idea).

I am wondering if our continuing efforts towards a co-produced, patient centred ME, CFS, & Long Covid Specialised Service might provide a small experimental way? Suffolk and NE Essex ICB area. SNEEICS.

We have asked for the 'right sort' of Service 'Clinical Medical' Lead to also have a research interest, proven track record, and likely avaliable opportunities to forge links locally to our Medical School in the University of Suffolk UoS .......yes, we have one!!!!

There is the Integrated Academy within the UoS, linked with our Integrated Care Service, the Integrated Academy UoS. The IA UoS is doing, has been doing some work on Long Covid.
As a consequence of this service development work, resources are being drafted and 'Linktrees' developed to make the information accessible.

I am unsure how much is currently in the public domain, (a lot of work has gone into this by the Transformation patient team and Task and Finish Membership. over a 2 year period (but most of the suggested initial materials should be available towards the end of January at formal procurement stage.)

The materials and documents have been assessed by various experts in the field externally, of specialist medicine, health, CY People. Social Care and education partners as well as within various areas of the ICB.

Perhaps then we could make this available to S4ME for Scrutiny, feedback and refinement?

 

[Sasha]

I use MEpedia from time to time, probably mostly because it comes up early on Google searches and tends to have useful bits of information on people and dates, with citations.

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.

 

[Suffolkres]

I am wondering if our continuing efforts towards a co-produced, patient centred ME, CFS, & Long Covid Specialised Service might provide a small experimental way? Suffolk and NE Essex ICB area. SNEEICS.

We have asked for the 'right sort' of Service 'Clinical Medical' Lead to also have a research interest, proven track record, and likely avaliable opportunities to forge links locally to our Medical School in the University of Suffolk UoS .......yes, we have one!!!!

There is the Integrated Academy within the UoS, linked with our Integrated Care Service, the Integrated Academy UoS. The IA UoS is doing, has been doing some work on Long Covid.
As a consequence of this service development work, resources are being drafted and 'Linktrees' developed to make the information accessible.

I am unsure how much is currently in the public domain, (a lot of work has gone into this by the Transformation patient team and Task and Finish Membership. over a 2 year period (but most of the suggested initial materials should be available towards the end of January at formal procurement stage.)

The materials and documents have been assessed by various experts in the field externally, of specialist medicine, health, CY People. Social Care and education partners as well as within various areas of the ICB.

Perhaps then we could make this available to S4ME for Scrutiny, feedback and refinement?

In part, our drive locally and need was to counter an early 2022 Public Health, 'Knowledge and Intelligence' Topic paper, issued after commissioning by our erstwhile Medical Director, a neurologist.... without our involvement........
He, MD. a subscriber of MUS, FND Dissociative Disorder who told Tina R and I, at an ICB inaugural meeting at the UoS , 'He knows nothing about ME....'.....

Well, that was red rag to bull..!

The misapprehension he, the MD had engendered, was firmly put to bed in 2023, with help from Charles with attendance on zoom.
We coproducers had our, 'look here sunshine moment'.....!

Thanks Charles. You did a timely intervention, spoke with authority and did a great job!
Offending paper was taken down....

 

[Sasha]

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 researchers in the world? What if we weren't constrained by how this has been approached in the past?

What would be our top 5? Top 10?

I'm going to lie down and think about it...

 

[Sasha]

Or the government e-modules (although I prefer a more traditional format.

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

 

[Peter T]

What would be our top 5? Top 10?

I'm going to lie down and think about it...

Am currently horizontal and also need to think about this, but I often think about the information I wish I had known about earlier in the course of ME, eg

• PEM
• Sensory hypersensitivities
• Orthostatic intolerances
• Potential food intolerances
• ?

essential to stress there are no evidenced based curative treatments and though the hopium pedlars will hate it, realistic information on prognosis, eg

• Full recovery the exception rather than the rule
• Improvement may be to a ceiling
• Improvement not guaranteed against future relapse
• Different courses of the condition

Obviously thought would be needed when this was considered relevant. Possibly only needs addressing at (six months? post onset), when a differential diagnosis between post viral fatigue and ME/CFS is more certain. Without this information pacing and activity management is an uphill struggle and many of us make bad decisions relating to life planning. However there is also no guarantee early on that new patients would be willing to accept this.

 

[Sly Saint]

MEpedia

it also has a lot of very out-of-date information and many links no longer work.
I don't think any of it gets checked for accuracy.

 

[Sasha]

looking at the Medical Schools Council's response to the recent PFD the medical schools are just teaching biopsychosociobabble

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...

 

[Lou B Lou]

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

May 2024
https://meassociation.org.uk/2024/05/nhs-england-launches-new-e-learning-module-on-me-cfs/


https://www.e-lfh.org.uk/programmes/mecfs-elearning/


https://www.s4me.info/threads/nhs-england-launches-new-e-learning-module-on-me-cfs-2024.38610/

.

 

[Haveyoutriedyoga]

What would be our top 5? Top 10?

I think this is great and have in the past shared thoughts on other threads about specific resources that I think would be useful, along with some content, I think the discussion and decision making process over what the priority list should be and who is willing to volunteer to do what might be best started afresh, others on the forum might not know to join the discussion based on the title of the thread.

 

[Sasha]

Far too many research outputs we see posted to S4ME have significant robustness or applicability problems even when they are not plainly nonsensical. [...]

Perhaps if we could find some reputable university willing to provide institutional support to a small "think tank" of clinicians, (genuinely) expert patients, researchers and perhaps a few of us with some relevant scientific or medical or other academic background who became patients? Such a group could provide advice and support to all manner of clinical & research efforts, introduce some real rigour into the field [...]

There is also a lot of research that could have been very useful to us but for, say, poor selection criteria, or use of poor outcome measures (like the CFQ with its many flaws such as asking patients to compare their experiences to an undefined prior timepoint). Things that many people here could've pointed out straight away. There are things that a group with institutional support and backing can do that the same people without those structures and support cannot (hence the "think tank" idea).

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 group in the UK, I have no faith that they are going to spend their research money judiciously or responsibly – and they are about to spend £1m.

With institutional support or not, I would love it if S4ME could convene a group of the kind you describe and immediately offer to the ME Association and our other charities the opportunity to have our expert group pre-assess their research proposals and make recommendations. The researchers making the proposals could even be invited onto a private subforum here with that expert group where the proposal could be discussed, critiqued, and suggestions for improvement given – or even recommendations that proposal be dropped. I think that would be a big advance on the usual peer review process where there is no discussion, simply a foghorn held by the peer reviewer. It could be a great learning experience all round and we could lift the quality of the field.

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?

 

[Trish]

Perhaps a useful starting point would be to ask members to put forward existing resources that they think are particularly accurate and helpful. No point reinventing the wheel when there is undoubtedly good stuff out there.

 

[Sasha]

I think this is great and have in the past shared thoughts on other threads about specific resources that I think would be useful, along with some content, I think the discussion and decision making process over what the priority list should be and who is willing to volunteer to do what might be best started afresh, others on the forum might not know to join the discussion based on the title of the thread.

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

 

[Haveyoutriedyoga]

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

Great, and I think Hutan summed it up well!

What if we had a thread for members to nominate resources they would like to have available, whether that is a guide on 'Pacing', information on 'What is ME/CFS?', even short pieces on 'Are ME/CFS and Long Covid related?', 'Severity levels in ME/CFS'; 'What [dieticians/occupational therapists/etc] need to know about ME/CFS'; 'Does CoQ10 help ME/CFS?'; rewrites of government information pages .....

And members could also say if they are prepared to be the project lead for a specific project, keeping the discussion on track, synthesising comments into a draft.

Then, the forum committee could pick a couple of topics to focus on first and appoint the project leads. We could set up the drafting threads and, off we go. We could have some sort of a voting process to accept a finished resource as a forum document, perhaps with the committee having the right of veto.

I think we also need a Chief Librarian - someone to sort through the resources we have and update things. @Cheshire and @Woolie both did good work on the Resources, but both are, hopefully temporarily, out of commission for health reasons. Have a look at the Resources section and if you think you could add some value to it, contact a committee member.

 

[Sasha]

I think the discussion and decision making process over what the priority list should be and who is willing to volunteer to do what might be best started afresh

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).

 

[Nightsong]

Great to see some of the ideas springing up on this thread.

Something else that's worth a mention is that research is usually informed by clinical insights and so on in a kind of self-reinforcing loop. Because of the lack of physicians we don't have that (at least not in the UK; it may work in the US) & the insights that usually come from careful clinical observation are absent; this seems an ideal area for expert patients to contribute. We've recently been discussing things like alcohol intolerance that seem to be rare in other patient populations but common in ME/CFS; those are the kind of insights that can sometimes inform research. Maybe worth some thought?

MEPedia is a complete mess - there's useful information, even some gems here and there but once again it's very much lacking in robustness.

As for patient-facing resources there are lots out there: what might be useful is to first assemble the best of the existing ones, remove anything that lacks evidence or support or is outdated on the first pass through, then merge together the best remaining ideas, rewriting along the way. (There seems to be surprisingly little on living with severe/very severe ME/CFS, apart from one or two MEA resources, Emily Collingridge's book, and some resources put out by the 25% ME Group. Maybe there are some books I don't know about?)

 

[forestglip]

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 initially to focus on producing outputs (or even just our first output) than putting effort into new infrastructure to show it.

I guess it's not so important it's a wiki specifically. They excel when anyone is allowed to edit, though MediaWiki does still work well as a more basic content management system because it's very well made while still being free. There might be simpler solutions that make more sense if only a few people can edit, though.

But I think people might be more motivated to contribute to make a high quality page if as soon as it's fairly finalized it's accessible in a polished form for the public. Informational pages as threads don't seem very accessible to me. Maybe if there were more prominent links to the Resources forum?

One possible vision of how it could work: every page gets its own thread for discussion here as well as the page on the wiki or other location. The page would be in "draft" form while being discussed here, and maybe several forum members would have permission to edit drafts based on consensus from the threads. Once people think it's fairly complete and reasonably error-free, it gets changed to "official" form, and is added to the area that is easily accessible from the home page/navigation bar. It'd be similar to the way it worked for Jonathan's Concept of ME/CFS thread which acted like a bit of a peer-review for his paper and was pretty impressive with over 300 posts. If anyone ever finds an issue with the page even after it's official, they can bring it up on the thread to request it be edited.

Having more than one or two people who are allowed to edit would be good I think since it spreads the workload and makes it more likely that if in five years someone brings up an issue, at least someone will be around at that time to update the page. A wiki has built in accountability since every edit is logged along with the person who did it, and all past versions can be seen and reverted back to easily, so it's not that big a risk to include too many editors.

 

[forestglip]

Presumably it would be possible to use Wiki style software in house and then have the result uploaded to pages that don't have the distracting editing tags and just look like finished educational documents?

Sure, all of the typical "wiki" stuff can be removed without splitting it between an "in-house" and final software.

Screenshot of another page of one of the wikis I linked above:


They removed everything except the date the page was last modified at the bottom, and for people that are really interested, the little three dot menu at the top has buttons to see discussion about the page (could be a link to the forum thread about it), the edit history, and the "source code" of the page. The edit button could be made to only be visible for people with permission to edit the page.

---

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.

 

[forestglip]

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.

 

[Hutan]

Thank you @forestglip for telling us about these software options.

We have collectively drafted quite a lot of content on the forum using our existing software, in both public and private areas, for example as part of responses to Guideline processes.

What we have done is reserve the first few posts in a thread for the draft, with subsequent posts available for members to suggest edits. We had a few people with editing rights incorporate what was said in the subsequent posts into the draft. I think it worked well enough, and I think would do for our first few projects.

Personally, I'm hoping that we could have a website that looks a lot like that layout you posted upthread

Something simple like that, I naively think, would not be very hard to create. And that would give us a place to paste the completed documents. We would want to have links on the documents to the thread where the content could be continued to discussed and updates proposed.

The wiki software you have suggested might be the way to go, initially or down the track. I don't have the expertise to know. But, we do have existing tools that have worked well enough to allow us to get to work on projects straight away.