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

There is also the complication in interpreting data from an app like visible because pwME fill in their daily symptoms and severity, without necessarily attributing, for example, increased pain, to the cause, as I understand it.

A lot of otherwise healthy women feel ill during their periods anyway, so adding that to ME/CFS symptoms could register on the app as worsened ME/CFS. I remember back to my pre ME days sometimes being very unwell with pain, fainting, vomiting etc during periods.

 

This looks to be a nice study, well conceived, well written I thought. Great that people are contributing their data; great that Visible is actively facilitating studies.

I thought this was worth noting:

It's in Table 1 as well. I don't know how being disabled is defined, but I would have thought all people with ME/CFS are, by definition, disabled. I was talking to people recently about how people with ME/CFS will often answer a question in a survey 'how is your health?', with 'good'. I've done it myself.

I'm not sure why that happens. Are we so used to having our illness minimised that we internalise that minimisation, and discount symptoms related to ME/CFS? Do we calibrate out health against our baseline, and so if we have been ill with ME/CFS for years, would we only say 'yes' if we were markedly more ill than our average health over the last few years?

I haven't see any comment about that in the paper yet, just starting the Results section.

 

On contraception:

There were only 70 people in the combined hormonal contraception category, and it's only just significant, and that's after adjustment in a regression for things like age and time since joining the app*. In the raw data, there was a trend but it wasn't significant. There looks to be about a 15% reduction on mean symptoms scores though, between users of combined contraception versus non-users.

*Time since joining the app seems to be a necessary adjustment as people add symptoms to track, presumably as they become more familiar with the app, and so their symptom score gets a bit worse with time.


Note that there were only 22 people in the progestin-only contraception (mini-pill). These people didn't have lower symptom scores than non-contraception users. You might expect the comment about people who use contraception are probably more well than most, give they are sexually active, might apply to this group too, but the mini-pill is often taken by people who just want to control period pain or have other health conditions.

So, I don't think we have strong evidence that combined hormonal contraception is helpful here, I am rather doubtful, although it is possible. It is certainly something that would be worth a study.

I think a bigger study of contraceptive use in people with ME/CFS is urgently needed, to try to understand if the apparent benefit is just due to the confounding of people with better health being more likely to be using it. Not only could such a study identify a useful treatment, but it also could shed some light on the ME/CFS disease mechanism.

 

From the supplementary materials, this interesting Jaccard similarity heat map. The dark blue columns on the right are for altered taste and smell. They are rarely reported with any other symptoms, only with each other - the little orange squares in the bottom right corner show they are fairly frequently reported together.

The orangey area in the middle is the association of a whole lot of typical ME/CFS symptoms with each other. Muscle ache, headache, fatigue and brain fog are very often reported together. These associations make the reddish area - bottom right-ish.

Noise sensitivity and light sensitivity are very often reported together.

Clusters of symptoms are identified by a dendrogram (on the top and left)

The symptoms found to be associated with menstrual cycle phases are:
Fatigue, Brain fog, headache, muscle aches, noise sensitivity, shortness of breath, memory issues, dizziness, joint pain, nausea, light sensitivity, anxiety, sore throat, depression, diarrhoea, stomach pain, light headedness, constipation, lack of appetite, pins and needles, migraine, blurred vision, acid reflux, cough, fever,

Symptoms not associated with menstrual cycle phases are:
Palpitations, muscle weakness, tinnitus, chest pain, nerve pain, allergies, tremors, numbness, derealisation, altered smell, altered taste

The differences by menstrual phase look to be fairly subtle though, with headache and migraine being the ones that stood out to me as having a significant difference, looking at the charts, with much less variation over the cycle with typical core ME/CFS symptoms.

 

I can't remember seeing that information. Here's an example of the record for crashes though, the menstrual phase is on the left, the dark brown is the proportion of crashes. There are relatively more crashes during the menstrual phase, but the differences compared to the other stages are pretty minimal. The p values are good, suggesting there are real differences, but I think it could be very hard to pick up the difference without the record keeping and statistics.

The chart for fatigue, for example, is even more subtle.

 

When I had mild ME/CFS I didn't consider myself disabled.

Spoiler: boring anecdote

The first time someone called me disabled I was quite upset. The context was that I was attending a residential course and had asked in advance for a bedroom where i didn't need to climb stairs to get to it. And I warned them that I would not be able to attend evening activities or go on the excursion.

When I went to sign in, I stood in the general queue, but when I finally got to the desk to register I was told loudly so everyone could here 'Oh, you're disabled, you have to go to that queue over there'. I found it very upsetting.

Even now I much prefer saying I have a disabling illness. Of course I am disabled now, and in some contexts say so.