Suggestions for research that creates new data?

[Sean]

This is a complementary companion thread to this one.

This thread is to list suggestions for research that creates new data (as opposed to the other thread which lists suggestions for research that uses existing data).

The kind of research that generates or tests new hypotheses or techniques/measures, or tests existing ones in a new or more rigorous way.

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My suggestions are:

1. For both research and diagnostic purposes we need an objective means of testing for PEM that doesn't require stressing the whole organism to provoke it. Can we provoke and measure PEM by other means, particulary in vitro.

2. From this thread, if patients are (supposedly) deconditioned then why do they tend to have Type II muscle fibre atrophy instead the usual Type I fibre atrophy for deconditioned people?

 

[Marco]

I'd like to know if there is impaired early (i.e. pre-attentional) sensory processing in PWME, particularly somatosensory.

 

[Samuel]

i don't want one second of any good person's time unnecessarily spent dissecting anti-scientific theories or being influenced by them.

it's good to look at muscle fibers if that's a priority.

and it's good politically to slog through every last detail of, for example, the harrassment or deconditioning narratives to the degree needed to stop the bad guys from obstructing progress, get justice, etc.

but it is mistaken to get distracted by constructed narratives. deconditioning never made sense in the first place. it is /scientifically/ no more necessary to disprove than witchcraft or space aliens. harrassment was a constructed narrative to stop legitimate inquiry such as requests for data and legitimate activism in the first place. it is /morally/ not necessary to disprove.

are we sure we don't sometimes shift from pretending to take nonsense seriously in order to debunk it correctly and with decorum -- to /actually/ getting distracted by the idea of witchcraft or space aliens? that is the point we have lost the big picture.

i am staying stuff is a priori wrong, non-operationalizable, or below epsilon in the first place.

i might be the only person who thinks this but it drives me bananas.

 

[Subtropical Island]

I’d like to second one of @Alice’s suggestions here:
Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018
About replicating trials of exercise physiology applied to people with ME/CFS, using heart monitors and other rest/‘exercise’ strategies we can implement at home.

[I know the first step is to learn how to rest. This was very very hard for me and would have been easier if I had had objective guidelines (what constitutes rest) but this might be too hard. I know that the heart rate monitor suggestion helped a lot in giving me something less subjective to focus on when first ill (I learned what it feels like when i’m Pushing myself too hard - I never did notice before as I learned from a young age to ‘push through’) and having claims about thresholds examined and verified would be tremendous.
Now that I have a better understanding of what rest means for me, I dearly wish to do all I can to maintain the fitness and underlying health I had before this hit. To know what limits might work for me, and if there are ways to tell if they are not working for me sooner, would be a huge improvement to my quality of life.]

@Alice points out, as I understand it, that there is a lot more known about extreme exertion in athletes (already funded by sports and althetics and fitness fanatics) and i’d point out that testing how that applies to ME/CFS is relatively cheap and easy. She says some has been done. If so, replication would be great. Or, if insufficient in any way, perhaps we could direct the people doing this research into a method which could lead to confirming (or modifying or denying) their approach.

 

[Subtropical Island]

Oh, and also from the same thread:

Studies to test the effects of GET and exercise in general on pwME. I am aware that there are ethical considerations here but some more studies into the effects of exertion, and patient usable definitions of levels of exertion, over time (multiple days, or a fortnight in detail and then perhaps a longitudinal study) would be very helpful.