AcH influenced
Member
Because it is quite the interesting case concerning mast cells I would like to start a topic mentioning Dianna Cowern aka Physics Girl here. Also previously mentioned at Healthrising forum topic
“Physics Girl Livestream to raise awareness and money for ME/CFS and LC with notes"
and that livestream with the things said in it about her symptoms were very interesting and some things people might have overlooked why that is, and I think we can actually draw some conclusions from it.
So she got the Covid, developed the Long Covid and the ME/CFS symptoms, but interestingly they mentioned that she developed MCAS too....6:10 min in live stream video. (I myself believe Long Covid is the same thing happening as ME/CFS, the Covid is just another trigger. That virus is long gone).
First let's see a screenshot from Dianna from youtube here (if you look at some of her "shorts" videos you see more of the same symptom):
You notice that she has that redness on her face and even a tendency sometimes to have an almost sort of "butterfly" shaped redness on her cheeks.
And why is that important ? Because it is a sign of mast cell activation I have noticed. And I have the same phenomena myself happening and I usually walk around everyday having a bit of a reddish complexion and "flushed" in the face, just like her. Now I have had it much much more than her in the past....at the peak severity of my illness I turned completely red-skinned from head to toe looking like a lobster/firetruck with severe flushing "attacks" in the face (and the accompanying "feelings" of an "attack") even on top of that! For many YEARS. And because of my red cheeks in the butterfly shape too happening sometimes researching my illness in the beginning I actually looked into maybe having Lupus.
But all of that is because of mast cell activation I now know. And my own severity of redness throughout the years follows the amount of disease state almost perfectly. More ill = more red + more severe reactions / attacks.
What was interesting for me to see is that the people in the video discussing Dianna (Kyle, her husband) do mention MCAS / the mast cell problems but that they seem to look at this more of an "extra" happening on top / alongside of a general Long COVID/ ME/CFS problem. She developed it, yes... but is that really just an "extra"?
What I found out myself however is that in my case it is actually the mast cell activation itself causing all my ME/CFS symptoms. They are permanently "on" causing my base level severity of disease (and I can notice changes I make as having an overall effect on severity of symptoms, though I am never able to make it disappear completely, just slightly worse/better).
Now why is Dianna's case so incredibly important for everyone else with ME/CFS ? (And it seems that people have failed to notice?) Because you can draw a conclusion from it.
If she developed these Mast Cell problems at the same time she was developing the Long COVID and/or the ME/CFS that means that there is a common link in that process. So just as an example it could indeed point to an immune system problem as the initial active process because the mast cells are part of that. And at the minimum the mast cells are responsable for a lot of the symptoms of ME/CFS. But it could also mean that it is ALL a mast cell problem. And somewhere in all of that there must be a reason why I measured high endogenous acetaldehyde too....
There is so much more to say about her case. The developing anxiety is typical, something in the mast cell mediators / acetaldehyde mix is responsable for that (acetaldehyde is a known anxiogenic btw) The sensitivity to sound and more, can't handle stressors any more, an emotional easily overwhelmed state of the brain, the seemingly IQ loss. The food effects on it all ! These are all my experiences too and are a mast cell / acetaldehyde problem. These mast cell mediators have great power over us, they rule us... both body and brain.
I don't know how to contact them but they say they follow Healthrising or maybe someone else could mention this topic to them. They can contact me too if they want because there is a whole lot more to say about it that they might find important.
“Physics Girl Livestream to raise awareness and money for ME/CFS and LC with notes"
and that livestream with the things said in it about her symptoms were very interesting and some things people might have overlooked why that is, and I think we can actually draw some conclusions from it.
So she got the Covid, developed the Long Covid and the ME/CFS symptoms, but interestingly they mentioned that she developed MCAS too....6:10 min in live stream video. (I myself believe Long Covid is the same thing happening as ME/CFS, the Covid is just another trigger. That virus is long gone).
First let's see a screenshot from Dianna from youtube here (if you look at some of her "shorts" videos you see more of the same symptom):
You notice that she has that redness on her face and even a tendency sometimes to have an almost sort of "butterfly" shaped redness on her cheeks.
And why is that important ? Because it is a sign of mast cell activation I have noticed. And I have the same phenomena myself happening and I usually walk around everyday having a bit of a reddish complexion and "flushed" in the face, just like her. Now I have had it much much more than her in the past....at the peak severity of my illness I turned completely red-skinned from head to toe looking like a lobster/firetruck with severe flushing "attacks" in the face (and the accompanying "feelings" of an "attack") even on top of that! For many YEARS. And because of my red cheeks in the butterfly shape too happening sometimes researching my illness in the beginning I actually looked into maybe having Lupus.
But all of that is because of mast cell activation I now know. And my own severity of redness throughout the years follows the amount of disease state almost perfectly. More ill = more red + more severe reactions / attacks.
What was interesting for me to see is that the people in the video discussing Dianna (Kyle, her husband) do mention MCAS / the mast cell problems but that they seem to look at this more of an "extra" happening on top / alongside of a general Long COVID/ ME/CFS problem. She developed it, yes... but is that really just an "extra"?
What I found out myself however is that in my case it is actually the mast cell activation itself causing all my ME/CFS symptoms. They are permanently "on" causing my base level severity of disease (and I can notice changes I make as having an overall effect on severity of symptoms, though I am never able to make it disappear completely, just slightly worse/better).
Now why is Dianna's case so incredibly important for everyone else with ME/CFS ? (And it seems that people have failed to notice?) Because you can draw a conclusion from it.
If she developed these Mast Cell problems at the same time she was developing the Long COVID and/or the ME/CFS that means that there is a common link in that process. So just as an example it could indeed point to an immune system problem as the initial active process because the mast cells are part of that. And at the minimum the mast cells are responsable for a lot of the symptoms of ME/CFS. But it could also mean that it is ALL a mast cell problem. And somewhere in all of that there must be a reason why I measured high endogenous acetaldehyde too....
There is so much more to say about her case. The developing anxiety is typical, something in the mast cell mediators / acetaldehyde mix is responsable for that (acetaldehyde is a known anxiogenic btw) The sensitivity to sound and more, can't handle stressors any more, an emotional easily overwhelmed state of the brain, the seemingly IQ loss. The food effects on it all ! These are all my experiences too and are a mast cell / acetaldehyde problem. These mast cell mediators have great power over us, they rule us... both body and brain.
I don't know how to contact them but they say they follow Healthrising or maybe someone else could mention this topic to them. They can contact me too if they want because there is a whole lot more to say about it that they might find important.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
