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Whatever we want to call POTS and MCAS, we need to separate them as subgroups from ME/CFS and measure when they appear together or separately if we want reliable study/trial results. Unless we want to claim that whilst our condition is legitimate, pwPOTS or MCAS are imagining theirs? I don't...

This is so relatable! Sorry you experience this crap too!

Mine do this too. It is worse at night and much more noticeable when I have eaten foods like curry or chilli. Perhaps I need to see if it happens after a non spicy high histamine food like canned fish.

Thanks - I do also get strange fluctuations in body temperature, and overreactions to heat and cold. So perhaps that makes sense. I have never had any reactions like this to chilli before covid/severe ME (i deteriorated and then got covid shortly after and got even worse) and was a big fan of...

I have allergic type symptoms too since becoming severe/getting covid, and hands going bright red after I eat high histamine foods like curry. I decided to take it seriously after two occasions where I ate a heavily fermented food (kimchi on one occasion and yellow bean paste on another) and had...

I'm sorry to hear Jo continues to be so unwell. Her unpublished data sounds interesting, but I'm curious - how does a pathology involving antibodies to signalling proteins differ from a classic autoantibody pathway?

All of this for one child, and yet all of the children sick with ME and LC are shunned and put through 'treatment' programs that just make them sicker. The dichotomy is crushing.

Anyone got any word on whats going on there? Last I heard Hwang et al were moving ahead with a small drug trial...

That thread is definitely a bummer! I don't know whether you saw these comments from JE though: So there is some hope in amongst all the bleak truth of that thread. There is also the daratumumab phase 2 study just beginning in Norway which looks quite promising. There are several threads...

Totally understandable! I remember trying to do academia with ME, it was hard going. Hope the collaboration requests are fruitful!

How goes your quest for muscle samples? Appreciate you may not be able to divulge everything but curious to know how your work is progressing.

So having reread this I think JE is talking about the inital Decode HLA analysis. And that it could well have picked out those connections but whatever it did pick up was discovered to be a computational hallucination so we were left with the DQ link. And I checked and DR is the HLA protein...

The lupus connection again...

Could you possibly clarify what you mean by this for laypeople like myself? Is DR the HLA that DQ is usually linked to but wasnt in DecodeME?

Don't we have to wait for the HLA analysis before we can conclude that they didn't show up? I thought the whole point of that is that the normal GWAS method can miss a lot about HLA.

This is what i was trying to get at earlier

Yes, I misread the abstract somewhat!

My brain fog is bad right now but couldn't these results suggest weak binding with all antigens rather than pathogen specific ones? As in immune dysfunction not viral persistance as the driver.

I have the bigger one of that and I'm quite happy with it!

HLA-C and DQB1! Does the conclusion they come to about persistent herpesvirus line up with the data? It doesn't look like they determined the binding affinity to other types of antigen. Edit: my mistake, missed the first part of that last paragraph.