Ignored, blamed, and sometimes left to die – leading expert ME explains origins of a modern medical ‘scandal’, Chris Ponting, The Conversation, 2024

Thanks so much, @dave30th and @Chris Ponting, for this new interview.

@Chris Ponting, you said that ME/CFS is 'about 10 to 20 years behind every other disease with respect to technology'. We've perceived one of our big problems as findings endlessly coming up null or studies being too small or too poorly done to point us in a direction that the field could jump on and pursue, but do you think that there are basic pieces of research, maybe using technologies that haven't been applied to ME/CFS, that are missing?

DecodeME seems to fill an obvious gap with a GWAS but what other basic research would you say we're missing?
 
Sasha said:
Thanks so much, @dave30th and @Chris Ponting, for this new interview.

@Chris Ponting, you said that ME/CFS is 'about 10 to 20 years behind every other disease with respect to technology'. We've perceived one of our big problems as findings endlessly coming up null or studies being too small or too poorly done to point us in a direction that the field could jump on and pursue, but do you think that there are basic pieces of research, maybe using technologies that haven't been applied to ME/CFS, that are missing?

DecodeME seems to fill an obvious gap with a GWAS but what other basic research would you say we're missing?
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In no particular order here are a dozen: (i) rare DNA differences causing disease (found using whole genome sequencing), rather than the common ones investigated in DecodeME/GWAS, (ii) "stratifying" pwME based on more rigorous clinical investigation and/or clustering of electronic health record/questionnaire data, (iii) studies investigating ME/CFS's true prevalence & incidence rates (in the UK & beyond, and in seldom-included communities), (iv) studies of those who recover/improve, (v) the physiological triggers of & responses to crashes and what causes descent into the severe phenotype, (vi) clinical trials of existing drugs treating POTS/Orthostatic Intolerance, (vii) identifying the "factor(s) in the blood", (viii) large-scale case/control autoantibody study, (ix) an effective blood-based biomarker diagnostic panel, (x) studies focused on the female disease bias, and interaction with oestrus cycle and menopause, (xi) post-mortem studies seeking evidence of persistent viral infection, (xii) commonality/difference in disease pathogenesis compared with MS, Long Covid & chronic Lyme.
 
Chris Ponting said:
In no particular order here are a dozen: (i) rare DNA differences causing disease (found using whole genome sequencing), rather than the common ones investigated in DecodeME/GWAS, (ii) "stratifying" pwME based on more rigorous clinical investigation and/or clustering of electronic health record/questionnaire data, (iii) studies investigating ME/CFS's true prevalence & incidence rates (in the UK & beyond, and in seldom-included communities), (iv) studies of those who recover/improve, (v) the physiological triggers of & responses to crashes and what causes descent into the severe phenotype, (vi) clinical trials of existing drugs treating POTS/Orthostatic Intolerance, (vii) identifying the "factor(s) in the blood", (viii) large-scale case/control autoantibody study, (ix) an effective blood-based biomarker diagnostic panel, (x) studies focused on the female disease bias, and interaction with oestrus cycle and menopause, (xi) post-mortem studies seeking evidence of persistent viral infection, (xii) commonality/difference in disease pathogenesis compared with MS, Long Covid & chronic Lyme.
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Wow... Thank you... Next question, of course, is how we get these done?
 
Sasha said:
Wow... Thank you... Next question, of course, is how we get these done?
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With one voice we ask the UK Govt (and other governments), and their funding agencies, to strategically prioritise ME/CFS research funding. If not forthcoming, then the obvious next question is: "Why not, given the huge disease burden and cost to the economy?" There will be a cost benefit from pursuing high quality ME/CFS research.
 
Chris Ponting said:
With one voice we ask the UK Govt (and other governments), and their funding agencies, to strategically prioritise ME/CFS research funding. If not forthcoming, then the obvious next question is: "Why not, given the huge disease burden and cost to the economy?" There will be a cost benefit from pursuing high quality ME/CFS research.
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Excellent! This might or might not be the place to discuss this but speaking with one voice to make this request is a project that will require leadership. How could we take that forward?
 
Chris Ponting said:
With one voice we ask the UK Govt (and other governments), and their funding agencies, to strategically prioritise ME/CFS research funding. If not forthcoming, then the obvious next question is: "Why not, given the huge disease burden and cost to the economy?" There will be a cost benefit from pursuing high quality ME/CFS research.
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Thinking about it, I’m not sure we’ve been very good at doing that as a community. The push for a big GWAS (Partly fuelled by opposition to mega) produced Eye catching numbers and support across charities.

I think this is a one area where we are hobbled by having lots of charities and particularly two or three big ones. It’s a lot easier when you don’t have to coordinate across charities.

When I worked for Oxfam, Oxon did collaborate with other development agencies. But they were all huge operations compared with any of our charities – And collectively, they could mobilise a lot of support.

There were, of course, always competing agendas and different viewpoints. But that’s easier to justify when the organisations are very large and each making a big impact in their own right.

I get the impression me orgs collaborate well through Forward ME, but that’s not the same as having one big common goal to press thegovernment on. But maybe this isn’t the place to discuss that
 
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Simon M said:
Thinking about it, I’m not sure we’ve been very good at doing that as a community. [...] It’s a lot easier when you don’t have to coordinate across charities. [...] I get the impression they collaborate well through Forward ME, but that’s not the same as having one big common goal to press thegovernment on. But maybe this isn’t the place to discuss that
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Very useful to have your analysis from your Oxfam experience. I agree this maybe isn't the place to discuss this. But where is? Can we move things forward?
 
Sasha said:
Excellent! This might or might not be the place to discuss this but speaking with one voice to make this request is a project that will require leadership. How could we take that forward?
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Tagging in @Karen Hargrave of #ThereForMe and @Aaron of the Billboards project

DM me if I can help?

See @Chris Ponting 's list of needed research projects in the post this is a reply to
 
Chris Ponting said:
(ii) "stratifying" pwME based on more rigorous clinical investigation and/or clustering of electronic health record/questionnaire data,
(iii) studies investigating ME/CFS's true prevalence & incidence rates (in the UK & beyond, and in seldom-included communities),
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These are going to be limited by the current lack of accurate and precise diagnostic criteria.

We have to work with what we have at the moment, of course. But any approach used for now is going to have to factor that limitation in, until we have better criteria.

(v) the physiological triggers of & responses to crashes and what causes descent into the severe phenotype,
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I have sometimes wondered what would happen if the test-retest protocol, as used for the 2 day CPET style studies, was just continued indefinitely, repeated every day, until patients completely collapse.

It is, of course, an ethically completely unacceptable study to do in practice, and I would oppose it totally.

But it is an interesting thought experiment, and if we ever get the means to do that kind of repeat challenge test in vitro (i.e. at no risk to actual patients) then I suspect we will get some very interesting and stark results.

My prediction is that at some point the results for patients will take a precipitous non-linear turn for the worse, compared to controls, quite possibly with the controls actually starting to move in the opposite direction (i.e. improving fitness) as they adapt to the challenge.
 
Sean said:
It is, of course, an ethically completely unacceptable study to do in practice
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But what we do know is we all have triggers that cause moderate to significant setbacks/crashes. I’d really like to find a way of doing before/afters of these. But I wonder about ethical approval even here? For instance I know I will have a significant reaction to and have repeated the experiment of having my covid vaccine. On the one hand this is ignored by medics but if the details were written in a research proposal I doubt it would get approval to be tested. So how would we go about this?
‘Normal’ ups and downs and crashes from life are perhaps easier to skirt around.

Obviously this is slightly different from your thought experiment, which is indeed interesting. But there’s a lot of grey areas to think about too.
 
Sean said:
These are going to be limited by the current lack of accurate and precise diagnostic criteria.

We have to work with what we have at the moment, of course. But any approach used for now is going to have to factor that limitation in, until we have better criteria.


I have sometimes wondered what would happen if the test-retest protocol, as used for the 2 day CPET style studies, was just continued indefinitely, repeated every day, until patients completely collapse.

It is, of course, an ethically completely unacceptable study to do in practice, and I would oppose it totally.

But it is an interesting thought experiment, and if we ever get the means to do that kind of repeat challenge test in vitro (i.e. at no risk to actual patients) then I suspect we will get some very interesting and stark results.

My prediction is that at some point the results for patients will take a precipitous non-linear turn for the worse, compared to controls, quite possibly with the controls actually starting to move in the opposite direction (i.e. improving fitness) as they adapt to the challenge.
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Yeah we currently have the issue with research into me that as soon as pwme can’t turn up on time they end up as drop outs rather than THAT being the RESULT really for much of the research where the treatment actually acts as a filter , filtering out the illest button-pressing by button-press

we aren’t even annotating what these things ‘do’ to all the pwme in all senses
 
hotblack said:
But what we do know is we all have triggers that cause moderate to significant setbacks/crashes. I’d really like to find a way of doing before/afters of these. But I wonder about ethical approval even here? ... So how would we go about this?
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I'm interested in this too. The only test we seem to have devised is the two-day CPET, which is (a) risky, and (b) to trigger PEM people have no need to exercise to ventilatory threshold anyway.

But how do you deal with individual thresholds and triggers in a trial, where you need to be sure you're comparing like with like?

On the other hand we only know PEM exists because people say it does, and only they know whether or not they are rested on one day and have PEM on another.

Until we've some inkling of what's going on, maybe we just have to utilise people's knowledge of how to trigger their own symptoms and trust them to say whether or not they were successful. As soon as a pattern of changes is picked up it becomes possible to test for it in a standardised way, but we need to know where to look for that signal first.
 
Kitty said:
Until we've some inkling of what's going on, maybe we just have to utilise people's knowledge of how to trigger their own symptoms and trust them to say whether or not they were successful. As soon as a pattern of changes is picked up it becomes possible to test for it in a standardised way, but we need to know where to look for that signal first.
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Yes, there’s a real mix of ethics and useful test design isn’t there?

Sorry I’m going to use myself as an example again, but perhaps a less extreme version.

I know walking up a flight of stairs will trigger problems. I haven’t done it for a long time but have had to or by choice numerous times over the last decade.

I’m less sure of how significant the impact would be of walking across the room, sometimes it’s fine, others not. And the impact may make me rough for a week but it’s not terrible.

So where does the line lie? What is ethically ok and what isn’t? And what is most scientifically useful?

From my background a clear reproducible case is what is most useful for investigating a problem in a complex system. These were electronic not biological but I assume the same is the case?

Are we going to have to go for vaguer ‘longitudinal studies’ where the triggers ‘just happen’. Or rely upon participants triggering themselves accidentally wink-wink. Or just skip more severe patients entirely?

It all seems a bit murky. And also the contrast into having to push ourselves on one hand (pretty much every NHS interaction) while being unable to honestly do so for research seems a bit of an irony.
 
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