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Kudos to the authors for a straightforward presentation of the null results in the abstract.

Don’t worry, we’ve become really good at washing out hands. Everything will be fine.

Are there examples of broader campaigns by pwME/CFS or pwLC that employ a similar narrative today? My impression is that things are generally lumped together into PAIS or whatever, which appears to be very counterproductive because it hampers scientific progress when nobody gets into the...

It seems like the editor believes that science is about following procedures and not about critical thinking..

In general I don’t like comparing diseases, but we can’t get around the fact that in a capitalistic world, everything is compared to everything. We have to speak their language if we’re going to have any chance of receiving funding. Even though I wish it would be sufficient to say that «ME/CFS...

How did they get pre-symptomatic MS patients?

Apparently they’ve found viral DNA in bone marrow post mortem, but that might not mean active viruses. https://pmc.ncbi.nlm.nih.gov/articles/PMC8100435/

Fatigue is often a very overlooked aspect of MS, so I’m not surprised if they have not picked up on PEM if it actually occurs. Based on conversations with pwMS that are more severe, the person I spoke to understood instant onset PEM very well. They also understood delayed PEM, but I’m not sure...

I agree that this would probably also capture people that do not have PEM.

Maybe having some kind of idea about what’s going on in there? It would be difficult to help a body part if it’s essentially a black box

Answers by them from the replies

Would this involve permanent damage to the thyroid? Or are you referring to something else with «damage»?

Who messed up the formatting here? First time I’ve seen that particular issue.

Which question does DecodeME attempt to answer? Is it «does pwME/CFS have this gene more/less often than others?» If so, wouldn’t that solve the issue of proving causality because a gene can’t make a difference for the rate of ME/CFS if it isn’t involved in one ore more of the disease...

How do you even do a study on the effects of X chromosomes? Can you just compare the rates between equal groups of men and women?

If this is supposed to function as a screening question, you need to assess its ability to avoid false positives. If you answer no to this question you clearly do not have PEM, but there is nothing here that differentiates between PEM, DOMS, rapid fatiguability, deconditioning etc. For any...

Says who? This is entirely circular. It says that this questionnaire measures PEM because it measures what we say that PEM is.

He’s yelling about table 10 in supplement 3 where they found a few minuscule differences on only a couple of the subscales. Of course without any correction for multiple comparison. And it’s an intention to treat analysis, which doesn’t account for dropout. Which is problematic when 26 % did...

It seems like they might also be implying that being an FND professional is stigmatised.

Directed at the patients: This is so toxic, I’m at a loss for words.