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.

 

Is it a reply to criticisms they have faced which they judge as “unfair”, or are they brainwashed by the narrative that ME organisations are militant and trying to “pacify” them?

 

To clarify - Schor is NIH director of intramural research.

 

Great job and a job well done @Hutan and others too !!

 

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).

https://www.s4me.info/threads/signi...ed-me-cfs-chris-ponting-blog.5520/#post-99655

https://www.s4me.info/threads/analy...erited-component-to-me-cfs-ponting-blog.4529/

 

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.

 

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.

 

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.

 

so maybe they do read the forums!

 

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.

 

Thank you to everyone who is recording their recollections and perceptions of the event.

 

Going by that timeframe it should only be 2030 when they come to the realisation that the effort preference claims are bogus.

 

I haven't watched any of this but I found these helpful in understanding the paper (apart from whatever Walitt is trying to say about a mismatch)


https://www.nih.gov/news-events/nih-research-matters/insight-into-mechanisms-mecfs

https://www.nature.com/articles/s41467-024-45107-3/figures/10

 

Nailed it!

 

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.

 

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.