Alll righty. I'm going to try and address this. Each main point will be in caps to keep things organized... THREAD! (1/12) #mecfsconference #pwME https://twitter.com/pinkproletariat/status/1105675888220389380

(1) ARE #PWME REALLY NKC (FUNCTION) DEFICIENT?
Without exaggeration, there have been 25+ of studies on this. The overwhelming majority say 'yes'. But many are still in doubt. (2/12) #mecfsconference #PWME

NKC function tests use flow cytometry, which is like playing 3-dimensional Sudoku! You mark cell types by marking multiple receptors, to be 'read' by shining multiple lasers, each of which will only register a limited no. of dyes. It's...complicated. (3/12) #mecfsconference #pwME

You may be thinking to yourself that we've known about NKCs a long time and so a flow cytometry protocol should be well-established. But you'd only be kind of right, because a NEW subset of immune cells were discovered darned recently: ILCs. (4/12) #mecfsconference #pwME

NKCs are now classed as a subset of ILCs, which tells you how similar they are to their brethren! So were we really measuring NKC function in older studies, or were we looking at other classes of ILC? And have people updated their protocols, now? (5/12) #mecfsconference #pwME

...I'm just kidding, I may be the only one who wonders that. (6/12) #mecfsconference #pwME

Anyway, the second issue is processing. NKC flow cytometry has to be carried out within hrs of collection. Now in how many studies did the sample sit on a lab bench for a few hours *cough*overnight*cough* and LOOK dysfunctional? (7/12) #mecfsconference #pwME

(2) IS NKC DYSFUNCTION UNIQUE TO #PWME?
No. Next question. (8/12) #mecfsconference #PWME

(3) OK BUT MANY ASSUME NKC STUDIES WERE CONDUCTED WELL. WHY IS #MYALGICE STILL NOT CLASSED AS AN IMMUNODEFICIENCY?
It may be that people believe 'inflammatory' & 'immunodeficiency' are somehow incompatible. (9/12) #mecfsconference #pwME

An underactive adaptive immune function with a compensatory hyperactive innate immune function is totally possible, e.g. (NKCs are now known to have BOTH innate and adaptive functioning, contrary to previous understanding). (10/12) #mecfsconference #pwME

Or like, an inflammatory early phase and a hypoactive chronic phase. The possibilities are basically endless, since the immune system is still a black box in many ways. (11/12) #mecfsconference #pwME

It's also possible that people may not consider 'immunodeficiency' a good descriptor of the symptom-picture. Think about MS: it's "neurological" but it springs from an immune system issue. Maybe researchers see #pwME the same way. (12/12) #mecfsconference #pwME