Preprint Digital health app data reveals an effect of ovarian hormones on long COVID and myalgic encephalomyelitis symptoms, 2025, Male+

I am definitely disabled and always identify as disabled. So maybe it’s just me and three others in this data who think so?

I do think the Visible data is useful but I’ve not been impressed with the recent findings. I think it’s a case of good data in poor hands, though. It seems a bit “we’ve worked out a thing, that’s it, we found something important” rather than “this is interesting we should explore it”. That could just be the reporting though.

 

Perhaps a stupid question but isn't it more likely that menstruation caused symptoms in addition to ME/CFS symptoms, rather than exacerbating those? In that case it wouldn't not tell use more about ME/CFS pathology.

 

ME/CFS is more common in women, so it isn’t completely unreasonable to expect that some of the unique characteristics of women’s biology influences the symptoms.

Idk how to (dis)prove causality, though. Any ideas?

 

Me either, since it's all subjective. If you include healthy people and ask them how much their fatigue increases on their period, who knows if a 2 point increase means the same thing to people who are healthy and people who are already fatigued.

 

Fatigue is a tiny part of it .

 

Yeah, we’d need a biomarker that’s tied to symptom severity first.

 

Which is insane!! I feel ashamed on behalf of men of science and medicine..

 

I was recently in severe pain (same as most months) I looked on the internet. I’d rate my pain at 8 on the 1-10 pain scale. If I didn’t know it was period pain, I’d call an ambulance.

Apparently it’s not a concern to have such pain for up to 3 days during menstruation. Intense pain, limiting your activities and making it hard to have a conversation, isn’t concerning unless it lasts into day 4. So yeah, periods don’t matter.

 

Just an example, but I don't think other symptoms would be much better.