How characteristic are elevated monocytes for pwME?

I'm asking because for me they seem to be consistently slightly elevated, in the 8.5-9.5 range. Not that I have a million test results but the few I have are consistent and this is the only value that is off.

I have very very mild Hashimoto's thyroiditis and I asked the endocrinologist at the university medical centre today if this can be a result of that. I specifically asked him if it can be excluded as a reason for the monocytes and he said yes, we can exclude it.

I remember reading a study a while ago that said something about monocytes, that they found that this value had one of the best correlations with ME but I also read about the opposite.

I'll bring it up with my GP next time but how noteworthy is this? So far no one has batted an eye.

 

What studies were those?

FWIW I seem to be the opposite of you. My monocytes are consistently around 0.2 since becoming severe and have never been high that I know of (but that could be lack of testing at the right times).

My white blood cells in general, monocytes included, are consistently low-normal to low since becoming severe (I've been getting at least 4 full blood counts a year for other reasons during this period). Doctor equally consistently ignores this. Prior to becoming severe WBC were bang in the middle of the normal range though monocytes were only 0.4 already back then (but I only have a couple of test results from that period).

I have seen other pwME mention the opposite, i.e. elevated white blood cells.

All of which is very interesting but I've no idea what any of it means. Sorry to be of no more help.

 

Mine are generally on the low/normal side. They don't represent how I feel.

 

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population

https://www.nature.com/articles/s41598-020-77105-y

 

Briefly discussed here. Though not the monocyte findings which at any rate I don't understand.
https://www.s4me.info/threads/deep-...se-population-kitami-fukuda-et-al-2020.17836/

The paper refers to three studies that had looked at monocytes, two didn't find anything to see and the third maybe a hint of something but it didn't look super-convincing (I only very quickly skimmed the paper though.)

The one with the slight findings was this one, can't find it discussed on S4ME yet:
Hardcastle, S. L. et al. Characterisation of cell functions and receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Immunol. 16, 35 (2015).
https://bmcimmunol.biomedcentral.com/articles/10.1186/s12865-015-0101-4

 

@Ravn

I've also found this Montoya study on treating people with higher IgG antibody titers against EBV and HHV-6 with the antiviral valgancyclovir.

Quote: "Biological endpoints included monocyte and neutrophil counts and cytokine levels. (...) In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001)."

https://onlinelibrary.wiley.com/doi/full/10.1002/jmv.23713

To be honest, my neutrophils are also borderline normal at the lower end, although not as off as the monocytes. I don't know anything about how my cytokines are doing. EBV was my trigger. So I'm wondering if I could be a good candidate for the antiviral treatment because of these.

 

OK, so my plan right now, as a layman:

- Get my cytokines tested to see what is going on. I'll do this privately because I'm frustrated by how slowly my diagnosis (by excluding everything) is happening with my doctor (6+ months now). Currently they only test for INF γ and IL-4. The bigger test is temporarily unavailable for some reason.
- I suspect that I might still be in that early stage where something more obviously detectable might be going on with the cytokines too. Mady Hornig said it is the first 3 years or so. I'm in the fifth but that may not be so late (compared to say 10+ years). But I have absolutely no time to lose if that is the case.
- If my suspicion is right, I believe I'll have a bit more "evidence" for my GP.
- I'll report back.

Edit: also signed up for NK function