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

[Jonathan Edwards]

This discussion has been split from
What do we know about oral rehydration or electrolytes for OI in adult PwME?

How can they be clued?

There aren't that many doctors who understand physiological control mechanisms well enough to apply their knowledge reliably. I suspect that will always be the case. AI systems may in ten years time be good enough to understand reliably - which will present an interesting situation. But they need to be programmed with logical methods, not with the popular text that is the basis of 'large language' systems

In the meantime the solution is probably groups like S4ME, teaching each other the real physiology and pointing it out to the doctors. The level of critical debate here is far higher than you get in a medical community.

 

[Nightsong]

In the meantime the solution is probably groups like S4ME, teaching each other the real physiology and pointing it out to the doctors. The level of critical debate here is far higher than you get in a medical community.

O/T for this thread but this is something I've been thinking about lately. All too often the conversations are limited mainly to a small group of patients, carers and people who are already predisposed to be sympathetic to us. There's a constant churn of nonsense in the academic literature; looking at the Medical Schools Council's response to the recent PFD the medical schools are just teaching biopsychosociobabble, the private physicians involved in treating pwME often have their own strange ideas. A lot of good conversations occur on S4ME but don't propagate outwards from here. Far too many research outputs we see posted to S4ME have significant robustness or applicability problems even when they are not plainly nonsensical. I also don't see that these conversations are happening inside ME advocacy organisations or charities or groups like BACME. Even some sympathetic researchers often don't seem to really understand ME/CFS; we all too often seem to be talking past each other.

How could we change this? 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...

 

[Jonathan Edwards]

A lot of good conversations occur on S4ME but don't propagate outwards from here.

Actually I think they do, at least in as far as such propagation might be useful. Trying to damp down the pandemonium of bad science is a lost cause. All that really matters is that good ideas, that might lead to an experimental result that might make it impossible for the community not to change its mind, are fed through. The history of that feeding through goes back before S4ME to the days when the same core community used another forum.

I have got used to the situation, both in clinical immunology and mind/brain biophysics that the vast majority of people cannot see the wood for the trees. Fields of enquiry become populated by closed groups, often linked to religious communities, and rehearsing received dogma mantras becomes the objective. It has got seriously worse in the last twenty years.

The two big opportunities in the last ten years have been feeding in to the NICE decision and setting up DecodeME. Both had significant input from this community. Chris Armstrong sees what goes on here, as does Rob Wüst. These are the sort of people I see genuinely interested in getting the right answer. Other things have filtered through, although they may not have a useful application as yet.

The human brain is an extraordinarily irrational organ. Which is not that surprising since it does not contain any single agent or subject but a vast colony of both, doing their best to co-operate while only being able to communicate with each other in a sort of Morse code. Plato didn't see the half of it. But there is hope.

 

[Nightsong]

All that really matters is that good ideas, that might lead to an experimental result that might make it impossible for the community not to change its mind, are fed through.

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.

Another case in point: the recent paper by those OTs. Very well meaning, all the right intentions - wrong, but not irremediably so. A few recommendations by a thoughtful group at the right stage could have made all the difference.

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).

 

[Sasha]

How could we change this? 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...

I love the idea of such a think-tank, but wonder if university institutional support is needed (or whether it might even be a straitjacket). We have so many useful people with science/medical/academic skills who are PwME (and now PwLC). In any other disease field I might wonder whether such a think-tank could work under the aegis of one of main charities in that disease area but...

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 [...]. There is no good set of patient-facing resources [...] 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.

That is a superb list of jobs that need tackling.

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).

Would you like to say a bit about the pros and cons of institutional support, and what could replace it if we couldn't get it? What form do you see that support and backing taking?

 

[bobbler]

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.

Another case in point: the recent paper by those OTs. Very well meaning, all the right intentions - wrong, but not irremediably so. A few recommendations by a thoughtful group at the right stage could have made all the difference.

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 get it.

the inevitable worry with think tank is the limited golden ticket for entry vs s4me somewhat meaning all can speak

I can agree that it could theoretically be possible for the first maybe first few iterations if said think tank to be a great group of people but what would need to be in place, even more so if it becomes influential, to stop the inevitable cliches (bps but also other cliches too) from turning it into something different from that intention. The usual banging on about balance being 50% niche cabal and ‘only those with a vested interest in the status quo’ (hidden under ‘those who delivered treatment for the last x years in nhs to pe cfs) been used as a crowbar

I like the idea but it’s worth exploring these questions to stave off it just being used as a career move by a variety of people without the same mission (making things better for pwme/ taking biomedical scientific knowledge on pwme forward - what should that be narrowed down to as a list?)

 

[Jonathan Edwards]

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).

Yes, my cynicism is at odds with my own continued attempts to overcome the very things I say are insuperable. The trouble is that the successes that I have had in science have never had any institutional support of that sort. I was supported as an academic by Versus Arthritis and UCL but the ideas I thought worthwhile had no support from anyone. Twenty five years on I am shown to be right but at the time nothing. Jo Cambridge had no support either.

But it would indeed be nice if the S4ME voice had some way of impacting the information stream - the educational side. So maybe we need to replace the MEA?

It would be nice to be supported by a University, yes, but I learnt early on that academics and units are only supported if it suits someone's vested interest to support. You are made a professor because someone else wants to get points from making someone a professor, not for any reasons of merit. And you have to wear the right coloured shoes - it hasn't changed.

I do agree that we should look for opportunities. I am doing that all the time, but it is a bit like salmon fishing. A lot of waiting. There have been some important changes at other organisations that I think may feed through to opportunities. Maybe even the MRC might have changed. That would be something.

 

[Sasha]

Yes, my cynicism is at odds with my own continued attempts to overcome the very things I say are insuperable. The trouble is that the successes that I have had in science have never had any institutional support of that sort.

That could be a good sign, if we can't get institutional support.

But it would indeed be nice if the S4ME voice had some way of impacting the information stream - the educational side. So maybe we need to replace the MEA?

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 the kind that @Nightsong is proposing producing educational materials and providing them to the MEA and AfME than leaving the charities to put out poor-quality stuff that undermines patients who take it to their doctors. Not sure what a good model for this would be, though - if we came up with good materials, how would we get them adopted? I don't know that S4ME has the capacity to put things like that out under its own banner (our committee is quite overstretched), but maybe that would be a good marque.

I do agree that we should look for opportunities. I am doing that all the time, but it is a bit like salmon fishing. A lot of waiting. There have been some important changes at other organisations that I think may feed through to opportunities. Maybe even the MRC might have changed. That would be something.

I'd love to see this taken forward. For years, it's driven me nuts to see expert patients here forced to David-and-Goliath it against huge opposing forces of bad science, and having some kind of formal organisation or group that included genuinely expert patients along with academics and clinicians would be a huge help. I think it's a development that's long overdue.

 

[Nightsong]

That one big thing that changes everything isn't all that is important: progress can be made by almost imperceptible incremental steps. Insights can come out of different fields. Such a group might also, say, hold ongoing discussions about the literature, producing new ideas for research. In time it might aggregate available datasets and run its own analyses, throwing up novel avenues for further research which are then taken up by supportive researchers.

A group that could provide a "think tank", including scientific and research related advice and support as well as reliable ME/CFS related educational and other resources, to charities, advocates and researchers alike might change everything. The existing organisations cannot do it. I really do think it is what we are lacking.

It would be nice to be supported by a University, yes, but I learnt early on that academics and units are only supported if it suits someone's vested interest to support. You are made a professor because someone else wants to get points from making someone a professor, not for any reasons of merit. And you have to wear the right coloured shoes - it hasn't changed.

I know, although I think there are one or two among those who support us who might have the connections to make this happen somewhere. And fundamentally a group with that kind of backing is taken far more seriously. A little funding for such an effort would go a long way, and there are other things that academic/institutional hosting might encompass, in terms of resources and infrastructure.

I have recently made it into my 40s and I'm not at all sure that, at the present rate, that we'll have a cure in my lifetime. In some respects we have been going backwards: as we discovered recently Acheson had a clearer idea of things in the early 1990s. I just see my life ebbing and flowing away.

I do agree that we should look for opportunities. I am doing that all the time, but it is a bit like salmon fishing. A lot of waiting. There have been some important changes at other organisations that I think may feed through to opportunities. Maybe even the MRC might have changed. That would be something.

Intriguing!

 

[Hutan]

Some of us in the S4ME committee have been thinking about creating a website with the forum embedded in it, with pages for resources, things like exemplar patient information and links to good quality advocacy materials. The idea would be that this information, (updated as necessary, translated too), could help patient advocacy groups and others provide well-evidenced information without all having to reinvent wheels.

But, to do that, we need time and energy, we probably would need to register as a charity and develop the systems to allow for low-level fundraising. We didn't get anyone come forward to join the forum committee at the last election, and we had two committee members resign. There's only so much the existing committee members and staff can do.

Personally, I'd love to see the forum be part of an international organisation such as the World ME Alliance, helping to inform organisations that support people with ME/CFS and make research funding decisions. A set up like that would enormously increase our impact and, I believe, would be a valuable service to patient advocacy charities. But, I don't think there is enthusiasm for that. Maybe there are other international/regional organisations interested in collaborating? Or perhaps we could be aligned with/part of a progressive foundation such as We&ME?

Part of the problem is that our discussions, as admirable as an approach of 'without fear nor favour' is, seriously piss people off. Only people who have done great work and/or are both really secure in themselves and humble can tolerate being the focus of a S4ME discussion about their work. The others disappear from the forum, with varying degrees of anger as they go, often to criticise the forum elsewhere. The saying is 'win friends and influence people', and the winning friends bit definitely helps with the influencing people.

 

[Trish]

Crossposted with Hutan.
I think the think tank idea is an idealised version of what some of us hoped S4ME could provide. We hoped to provide a space where pwME, carers, scientists and clinicians would come together to learn from each other and be a catalyst for better research, advocacy, understanding of what ME/CFS is, production of better resources and so on. We have glimmering of it. A few researchers join us for discussions of their work, a few pwME and carers work on challenging bad research. Some papers have been published by teams who met here and on the previous forum. But we are a tiny part of the ME/CFS world. Active researchers are too busy to spend much time here, and most of us pwME are too sick or too unscientific to contribute at the cutting edge of science.

Realistically, no single group will produce all that is needed. There are some teams doing good work we can name.

 

[Jonathan Edwards]

progress can be made by almost imperceptible incremental steps. Insights can come out of different fields. Such a group might also, say, hold ongoing discussions about the literature, producing new ideas for research. In time it might aggregate available datasets and run its own analyses, throwing up novel avenues for further research which are then taken up by supportive researchers.

But that is precisely what we are already doing, isn't it?

 

[Nightsong]

Part of the problem is that our discussions, as admirable as an approach of 'without fear nor favour' is, seriously pisses people off. Only people who have done great work and/or are both really secure in themselves and humble can tolerate being the focus of a S4ME discussion about their work. The others disappear from the forum, with varying degrees of anger as they go, often to criticise the forum elsewhere. The saying is 'win friends and influence people', and the winning friends bit definitely helps with the influencing people.

I can understand that; of course, critiques on S4ME are public and necessarily come after publication. A "think tank" might by contrast be consulted privately and early on, before any research actually took place, or might be consulted pre-publication to help shape a paper; no conflict, just cooperation. It might produce critical articles or letters to the editor about egregiously bad research, but those researchers would never cooperate with it anyway.

But that is precisely what we are already doing, isn't it?

There are always lots of extremely interesting discussions here, but we need some way to translate those insights into real-world benefits for pwME. There are a variety of different groups that are talking past each other and in many ways things seem to be going backwards for us.

And I wouldn't say it's too idealistic to envisage a group that could produce decent educational & patient-facing materials, advise on research, advocacy and educational efforts, and receive some reasonable funding and support for their efforts.

Something needs to change.

 

[Jonathan Edwards]

Part of the problem is that our discussions, as admirable as an approach of 'without fear nor favour' is, seriously pisses people off.

But that is only because they cannot handle being told simple truths about their bad research. The broad body of research in ME/CFS is bad. It is in other areas too but there have been fewer bright spots in ME/CFS research. The people who I think are actually interested in getting the right answer don't mind what is said here. There aren't many of them but that is not a reason for not being up front about poor data.

 

[Sasha]

I have recently made it into my 40s and I'm not at all sure that, at the present rate, that we'll have a cure in my lifetime. In some respects we have been going backwards

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 cure in yours! But I agree that we've gone backwards in many ways, and the field is wasting time through a lack of clarity, rigour and focus. I think a think-tank could play a role in providing that, and ultimately providing leadership. But it might take baby-steps to get it off the ground.

 

[Sasha]

Some of us in the S4ME committee have been thinking about creating a website with the forum embedded in it, with pages for resources, things like exemplar patient information and links to good quality advocacy materials. The idea would be that this information, (updated as necessary, translated too), could help patient advocacy groups and others provide well-evidenced information without all having to reinvent wheels.

But, to do that, we need time and energy, we probably would need to register as a charity and develop the systems to allow for low-level fundraising. We didn't get anyone come forward to join the forum committee at the last election, and we had two committee members resign. There's only so much the existing committee members and staff can do.

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 first step, and see if we have people who can volunteer to do them.

Providing resources would be one way to attract more people to the forum, including people who could offer additional energy and expertise. I think there's a huge untapped resource of PwME and PwLC. Once we've got some resources up, we could even advertise in the ME charity mags - including a call for volunteers.

 

[Nightsong]

But that is only because they cannot handle being told simple truths about their bad research. The broad body of research in ME/CFS is bad. It is in other areas too but there have been fewer bright spots in ME/CFS research. The people who I think are actually interested in getting the right answer don't mind what is said here. There aren't many of them but that is not a reason for not being up front about poor data.

It doesn't surprise me how thin-skinned academics can be. But I do wonder how some of them may have been able to do far better, more useful research if they had a clear concept of what ME/CFS actually is and a group that was willing to partner with them and help guide their understanding. Many would not engage but a few might.

Here we tend to tear things apart long after there is any chance to influence them. I'm suggesting trying something else (ETA: not in place of S4ME but as a separate effort).

 

[Jonathan Edwards]

I think the important thing is to list projects we think are worthwhile and prioritise them as a first step, and see if we have people who can volunteer to do them.

Just one project would be a good start. ME/CFS Skeptic has shown that it can be done and done very well. I would certainly support some webpages with educational material on them.

 

[Kitty]

And I wouldn't say it's too idealistic to envisage a group that could produce decent educational & patient-facing materials, advise on research, advocacy and educational efforts, and receive some reasonable funding and support for their efforts.

One of the things we could potentially do for fellow patients is publish info that equates to the information leaflets provided by the charities, possibly using the leaflets as a starting point. We take apart research papers, there's no reason we couldn't take apart current advice on living with ME/CFS, pacing, etc.

 

[Sasha]

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.