2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

I was surprised at the number of comments about 'holding hands to move forward together' and that sort of thing (Nath, Schor), with the cartoons of people literally holding hands and walking off into the sunset or whatever.

I haven't dialed in to one of these before, but have not experienced that sort of...direct appeal?? in conferences before.
 
I thought the splitting of women into B-cell activation and men into T-cell activation seems interesting even though there's probably not data to support it.

Seems like this possibility was discussed on this forum many years ago, where @Jonathan Edwards had already made this suggestion (note: This was years ago before a lot of different data incuding RituxME and someone would have probably already looked at the sex data as well there).

Jonathan Edwards said:
People have been talking about ME being an autoimmune disease - which would be B cells. But post-infective illnesses tend be driven by T cells. So I suggested to Chris that maybe women have B cell ME, because B cell diseases are more common in women,and men have T cell ME, because at least some T cell diseases are more common in men. But if it turns out not to be much to do with lymphocytes then maybe brain mitochondria are susceptible to different problems men and women.
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https://www.s4me.info/threads/signi...ed-me-cfs-chris-ponting-blog.5520/#post-99655

Jonathan Edwards said:
I was talking to Chris Ponting about this last week.

Take inflammatory arthritis. It is three times as common in women as in men and has a genetic association with HLA-DR4. BUT hidden within that it runs out that there are two groups of diseases. One is rheumatoid arthritis, which links to DR4 and is more common in women. The other is seronegative spondarthritis, which links to HLA-B27 and some forms are more common in men. So the link to DR4 is stronger in women with inflammatory arthritis than in men.

I would not be surprised if there were two main types of ME. One may be six times more common in women. The other may be twice as common in men. T cell diseases tend if anything to link to men so maybe men get the T cell disease that explains Mark Davis's finding. (And of course that means we want to know how Mark Davis's data break down for men and women too.) That would explain why ME seems to be more common in women yet the Davis 'immune signature' seems to have something to do with T cells. It also gets us away from always saying that because ME is more common in women it must be this or that sort of disease. One sort maybe, but not another.
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https://www.s4me.info/threads/analy...erited-component-to-me-cfs-ponting-blog.4529/
 
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Lipkin: To the patients, the people with ME/CFS, people with Long COVID, you are heard. We don’t have enough resources to do what we need to do and if I’ve learned anything at 40 years of doing this kind of work, you need better advocates. The squeaky wheel gets the grease.

Komaroff: Indeed.

Edited to add: We get to get blamed at the start of the symposium and at the end. WTF.
 
Hutan said:
The participants were asked how fatigued they were, on a visual scale, presumably from 1 to 10. ME/CFS groups had higher fatigue at baseline, but didn't report tiring faster. The change in the reported fatigue was the same in both groups. Which is hardly surprising under those circumstances. It's a factor of where you start. If you start at 6, you can really only go to around a 9 and still be communicating. If you start at 0, you will probably only go to a 3 after cognitive tests.
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and of course your scale. Before you get ME/CFS you don't know fatigue can go higher than that time you ...
and in fact I'm not sure that those who haven't had it or something similar would even think to equate 'being very ill' with 'fatigue' ie do most 'norms' use 'that time I had cancer/malaria/chicken pox at its worst' as their 'childbirth' for the painscale equivalent? or do they think of that as them being 'ill' and 'barely conscious'

after you get ME/CFS then you get used to trying to do a full time job and run a home on twice what normal people would have rung in sick for. And think that was a good day. You know that you can't say that is a 1 or 2 compared to 'norms' but you also know that isn't anywhere near not being able to lift a drink to your mouth in PEM at the weekend.

I have no idea where that means the rest of the scale places.
 
Hutan said:
Question about POTS prevalence. Suggestion that it is a referral bias results in the over-estimation of POTS. Nath did note that there is autonomic dysfunction. Walitt noted that the lack of statistical difference wasn't that many of the ME/CFS group didn't have POTS, it was that a substantial number of the healthy volunteers did
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Didn't watch the presentation but I did see that at least one, if not more, of the controls were closely related to the participants. Given that there is likely a genetic component to these conditions, this might explain why such a high proportion of healthy controls had orthostatic symptoms in this study.

I don't think this is a problem in of itself, especially in conditions where we can rule out the disease in question in relatives. However, in ME/CFS & POTS, we can't ensure that these controls didn't have have the same disease process occurring but at a a level with much more manageable symptoms.

Given the sample size was so small in this study, even having one less control with orthostatic symptoms would have produced a significant difference between ME/CFS and controls. While I am still surprised that more ME/CFS patients didn't have orthostatic issues, this could explain why they didn't find a statistical difference.
 
Eddie said:
Didn't watch the presentation but I did see that at least one, if not more, of the controls were closely related to the participants.
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Yes and one of the related participants reported developing Long Covid after the first visit. Of course we don't know how if she was one of the 'healthy controls' who was recorded as having POTS, but there may have been some confounding with relatives used as controls.
 
bobbler said:
and of course your scale. Before you get ME/CFS you don't know fatigue can go higher than that time you ...
and in fact I'm not sure that those who haven't had it or something similar would even think to equate 'being very ill' with 'fatigue' ie do most 'norms' use 'that time I had cancer/malaria/chicken pox at its worst' as their 'childbirth' for the painscale equivalent? or do they think of that as them being 'ill' and 'barely conscious'

after you get ME/CFS then you get used to trying to do a full time job and run a home on twice what normal people would have rung in sick for. And think that was a good day. You know that you can't say that is a 1 or 2 compared to 'norms' but you also know that isn't anywhere near not being able to lift a drink to your mouth in PEM at the weekend.

I have no idea where that means the rest of the scale places.
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Scales based on subjective experiences/sensations are not necessarily linear progressions, as @bobbler has pointed out. It is basic experimental design to bear in mind that these numerical ratings are not actual numbers but metaphors (if I have got the right word), so that doing ‘maths’ with them does not necessarily produce meaningful results.

It is quite possible that a two point change in one part of the range is nowhere near the equivalent of a two point change in another part of the range, also there is no guarantee that one person’s rating means the same as someone else score the same.

Research using such measure should always be cautions with treating their rating scales as behaving the same way as real numbers: in ‘two apples’ the two has an objective meaning but on a self reported subjective scale we have no way of independently verifying what a rating of ‘two’ actually refers too. It is all too easy for researchers to get carried away and forget though their data is recorded as numbers that these are not the same things as the numbers we use for basic arithmetic, in a sense it just an arbitrary convention that we use the same symbols for both.
 
I ran out of energy to follow it half way through, but left it running most of the way through and picked up on a few bits and pieces.

I gathered from the diagram with several columns that was too small to read that they had an overarching hypothesis and the presentations were ordered to create a sense of a clear pathway through aspects of that hypothesis.

At each stage through the day they introduced the next group of presentations and showed on this recurring diagram which vertical strip was being covered.

The combination of this and many other screens being too small to read on my small laptop, and my tiring brain meant I ended up losing track of the overall argument.

I have tried reading the published paper but keep stalling on their repeated attempts to relate everything to effort preference, which just makes me disbelieve it all.

Can anyone with a more functioning brain summarise the overarching hypothesis for us, and summarise how the different findings fit in?
 
I have moved the previous theory post to thread.
Link to new thread: An Update of a Theory
But still:

And of course any shift in effort preference is a rational response to all the blasted signalling going on in the immune system. Which is sort of what Nath seems to want to say but is totally screwed up by all the mind-body garbage from the other side of the team.
 
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Hutan said:
Question about POTS prevalence. Suggestion that it is a referral bias results in the over-estimation of POTS. Nath did note that there is autonomic dysfunction. Walitt noted that the lack of statistical difference wasn't that many of the ME/CFS group didn't have POTS, it was that a substantial number of the healthy volunteers did.
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That is really impossible to accept. By definition a healthy volunteer cannot have POTS. POTS is rather rare, it's actually hard to find people with POTS, although mostly because of systemic opposition to its existence, but also because of how ridiculously unlikely it is that someone with POTS would decide to be a healthy volunteer in a clinical study. The precise number of healthy controls with POTS in any cohort of a clinical study should be zero. Full stop.

They had this responsibility. They failed at it.

And then there's how absurd the response to "it's OK that some of the participants could not perform the task" given how miniscule the difference is, when a single participant was enough to tip the entire significance, in part because it was such a tiny study. What a bunch of worthless nonsense. They're asking for less criticism while basically making a mockery of themselves, exposing themselves to deserved ridicule by using nonsense excuses like this. People need to be fired over this, like hell they will receive less criticism when this is the pathetic response they give.
 
rvallee said:
And then there's how absurd the response to "it's OK that some of the participants could not perform the task" given how miniscule the difference is, when a single participant was enough to tip the entire significance, in part because it was such a tiny study. What a bunch of worthless nonsense. They're asking for less criticism while basically making a mockery of themselves, exposing themselves to deserved ridicule by using nonsense excuses like this. People need to be fired over this, like hell they will receive less criticism when this is the pathetic response they give.
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Yes, and it's important to also consider the consequences of that 'worthless nonsense'. It's one thing to produce worthless nonsense, lots of people do that a lot of the time. But it's quite another for that worthless nonsense to direct the thinking of arguably the most significant funder of medical research in the world and for that worthless nonsense to contribute to the view of people with ME/CFS as disabled by their thoughts, and variations on that theme.

Jonathan Edwards said:
Which is sort of what Nath seems to want to say but is totally screwed up by all the mind-body garbage from the other side of the team.
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I'm not sure that Nath is on a different side to those with all the mind-body garbage. It's so hard to tell, and possibly he and they aren't even sure what they are saying. But, I was disappointed to hear some vague wittering from Nath at the end of the seminar about combined approaches to treatment. It sounded as though there is some thinking that people with ME/CFS have fallen into bad habits that we have to be helped out of. When the seminar is available for listening to again, I think it will be worth listening out for those comments. And/or asking Nath what he meant.
 
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