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What medications are those that have changed your experience of PEM? Honestly, what you've described suggests that it's worth investigating whether you may have something else rather than ME, because I don't think that's typical. I don't think I had PEM when I was mild either, then I eventually...

Another thing... Some people will think "well nobody else in my family has ME, so it can't be genetic, so this is pointless research". So it would be good to emphasise that that's not exactly what is meant by genetic research.

Yes that's a really good point, I think the peak of post exertional fatigue is probably a good way to differentiate PEM vs PEF? PEF I'd think the peak ("worst point") would usually be immediately or soon after the exertion, whereas with PEM the peak is between hours to days afterwards.

No worries at all, I wouldn't expect anyone to remember. Frankly it's a miracle that I even remember it myself

Many do get it, but a fair number don't. I ran a poll on this forum about PEM symptoms a few months or so ago.

I understand that the me/cfs biobank questionnaire is being used to check that participants have me/cfs? When I did the biobank questionnaire last year, there was a question like "do you have fatigue that is not relieved by rest?" I think this is not a good question because when I was less...

They can keep saying that, but it won't change the fact that it happened to people.

I'm not sure about that. Doesn't that risk including people who had something else which was misdiagnosed as ME?

But then the population completing the questionnaires is self-selecting and not representative of the cohort participating in the GWAS.

Are those high or low effect sizes? I can't remember how those statistics work :( And can somebody remind me what confidence intervals mean? I understand p-values much more easily, don't like it when papers use confidence intervals instead. And what does I2 mean??

I have booked a doctor's appointment.

Just commenting to add that a persistent change in bowel habit can also be a symptom of ovarian cancer, so any women experiencing this should ask to be checked for this too.

Why do you think that?

I know. I will see the doctor. But I feel like doctors are so unreliable that I won't know if I can trust them anyway. I know a bloke who went to his GP about persistent loose stools and GP said that it was probably stress related and didn't refer him on. A couple years later he died of bowel...

Nope

Dang, well I certainly didn't stop my vitamin C supplements before doing the test, so that means a false negative was possible. There's still my low calprotectin though. :)

I'm 25.

Yep that's what I had privately through Genova.

Might be of interest to @lunarainbows as she has Lupus as well as ME.

The NICE guidelines for referral are different depending on your age, though: Refer adults using a suspected cancer pathway referral (for an appointment within 2 weeks) for colorectal cancer if: they are aged 40 and over with unexplained weight loss and abdominal pain or they are aged 50...