Michael VanElzakker

Would love to know how to differentiate these symptoms from MCAS. Are they distinct or participate together?

I don't know- it's not certain that viruses are actually driving symptoms of ME/cfs in most cases, although the above is something that tends to get ignored in that debate IMO. You'd expect nearby mast cells to get activated, but MCAS is more systemic than that.

I really appreciate that you engage with patients. Many patients are sponges for information, just trying to understand. I, like many #PwME, have had a multitude of viral exposures...and wonder which ones matter and how much of the healthy population share such exposures.

My opinion is that location of viral infection and vulnerability interact to drive pathogenesis but that's an opinion still and I could be wrong. The vast majority of humans have latent herpesvirus in their bodies but I don't think that necessarily means they are always benign.

Did U read About the recent findings on #EBNA ? Not so latent ...but not often tested. tested positive Twice. then there is Also #HHV6 DNA PCR : biopsy positive too. Q: do these viruses pop up bc of low #NK function? Mastcells: high basophiles-> Histamine issues. On prednisone

We don't know if they pop up because NK cells aren't working like they should, but that's a reasonable hypothesis. The fact that they do pop up doesn't necessarily mean they are driving symptoms - it could be an effect of immune problems rather than a cause.

I know Michael. I really didn’t have a choice. Basophiles, eosinophiles, monocytes, Leukofiles, ... up up up. itching horribly since march 17. Stopped meds, took histamines, tried everything ... stumbled on basophiles & its mastcell properties. Predn 1st thing that works. Sigh.

this must be a major factor in ME.CFS and I wonder if it can be a co-infection too alongside others, even common cold, that just push immune responses Th1-Th2 pat a point of return to homeostatis, then ramping up of CNS signals, then all the problemss from this eg hormonal, sleep

Right, also - common colds can cause reactivation (like a cold sore, but inside your body), and during reactivation herpesviruses like to move through nerve tissue and can even cross synapses.

I‘d had what turned out to be Coxsackie b4 for a few weeks then a dreadful flu-type illness in France. I wonder if the combination - and being eighteen and away from home - evolved into ME...

I was already ill but after full blown cold sore virus I was never the same again. One day capable of academic study the next not, now struggle with basic memory, facial nerve pain, nervous system probs.

To me, that kind of phenomenon at the beginning of your illness is evidence that antivirals are worth thinking about in your particular case.

I had an allergic reaction to acyclovir and have severe MCS/ MCAD or whatever it is. I agree with you though but no safe way of taking under medical supervision in UK.

And this wouldn't show up in blood tests, right?

I have so many patients with ME. This is an area related to but somewhat separate from my pain practice. What treatment options do you recommend?

If anyone is trying to follow the threads:https://twitter.com/MBVanElzakker/status/1011693816221454336 …