When Dr Afrin and Dr Theoharis Theoharides were doing research in the late 1990s, the medical community largely ignored their research. They had trouble getting funding to support their research to further it along. Clinical doctors didn't believe the research....probably largely because they didn't learn about it in med school. There is no tracking of those of us who went to the dr 10yrs ago, 20yrs ago, etc, etc, etc. This situation is the same as Chronic Fatigue Syndrome as well as Fibromyalgia....recognized medical diseases but lots of doubt about it in medical clinics, etc. Finally 20 yrs or so go by and they are accepted diseases...as the reason but still no real treatment. Now that more ppl have same symptoms as the 'strange ones that came before'...in long covid and after the spiked covid vaccine...money started to be pumped into research and that is the only way that MCAS diagnosis actually was able to see the light of day. If ppl would have believed in the initial research of Afrin and Theoharides and others....perhaps they would have been farther along by now. But we should show our appreciation to Afrin and Theoharides for sticking to it and not giving up. Others might have given up because they were largely shunned by their professional peers. I find it interesting that more women have this than men....especially because ppl in power have dismissed women's thoughts, opinions, etc in any professional career.....it kinda makes sense unfortunately.
I would like to see a vid about what the mast cell disease does to the body long term...for ppl who have had this for more than 10 years BUT stilo haven't been diagnosed. (2022, I was told by an immunologist that there was absolutely no way I could have MCAS, wrote this in my chart...as I brought the topic up....I knew otherwise as I had been researching it. This was 2022...in Madison, Wisconsin....the dearth of any advanced medical information....midwestern states?) Lots of fb grps though that offer support, answer questions, etc.
Hopefully AI could be able to work with Afrin and Theoharides and others treating patients...to enter in all mediators and related symptoms, treatments that had worked for some and maybe not others. But hopefuuly AI could be able to see some initial patterns...to help the drs who are learning. Maybe it could also make predictive combos or give more ideas for research. Teaming up with university data science research students...giving them real world experience, etc. Maybe a portion of medical students could go to patients...requesting those histories (doing a research in medical records for typical prior diagnosis...EDS/HSD, POTS, fibromyalgia, chronic fatigue, multiple chemical sensitivity, etc, etc, etc...)....finding these folks, doing the complete medical histories as well as the QUESSI survey and other surveys.. give the med students the leg work as part of their training....give them training about mcas so they could analyze them in discussion rounds, etc. If those patients haven't gotten any possible diagnosis of MCAS....the students could give them a possible explanation.
Wow! Like sitting at the feet of Plato in ancient Athens as he philosophises on our woeful knowledge of reality. However, ignorance is bliss and where MCAS medicine is right now is very depressing - with decades of research ahead. Our children and grandchildren will be the ones who benefit.
When Dr Afrin and Dr Theoharis Theoharides were doing research in the late 1990s, the medical community largely ignored their research. They had trouble getting funding to support their research to further it along. Clinical doctors didn't believe the research....probably largely because they didn't learn about it in med school. There is no tracking of those of us who went to the dr 10yrs ago, 20yrs ago, etc, etc, etc. This situation is the same as Chronic Fatigue Syndrome as well as Fibromyalgia....recognized medical diseases but lots of doubt about it in medical clinics, etc. Finally 20 yrs or so go by and they are accepted diseases...as the reason but still no real treatment. Now that more ppl have same symptoms as the 'strange ones that came before'...in long covid and after the spiked covid vaccine...money started to be pumped into research and that is the only way that MCAS diagnosis actually was able to see the light of day. If ppl would have believed in the initial research of Afrin and Theoharides and others....perhaps they would have been farther along by now. But we should show our appreciation to Afrin and Theoharides for sticking to it and not giving up. Others might have given up because they were largely shunned by their professional peers. I find it interesting that more women have this than men....especially because ppl in power have dismissed women's thoughts, opinions, etc in any professional career.....it kinda makes sense unfortunately.
Fantastic podcast. Perfect. A plethora of information. Thanks for posting it.
I would like to see a vid about what the mast cell disease does to the body long term...for ppl who have had this for more than 10 years BUT stilo haven't been diagnosed. (2022, I was told by an immunologist that there was absolutely no way I could have MCAS, wrote this in my chart...as I brought the topic up....I knew otherwise as I had been researching it. This was 2022...in Madison, Wisconsin....the dearth of any advanced medical information....midwestern states?)
Lots of fb grps though that offer support, answer questions, etc.
Well done
My daughter is a pt from MUSC still trying to find her cocktail
Hopefully AI could be able to work with Afrin and Theoharides and others treating patients...to enter in all mediators and related symptoms, treatments that had worked for some and maybe not others. But hopefuuly AI could be able to see some initial patterns...to help the drs who are learning.
Maybe it could also make predictive combos or give more ideas for research. Teaming up with university data science research students...giving them real world experience, etc. Maybe a portion of medical students could go to patients...requesting those histories (doing a research in medical records for typical prior diagnosis...EDS/HSD, POTS, fibromyalgia, chronic fatigue, multiple chemical sensitivity, etc, etc, etc...)....finding these folks, doing the complete medical histories as well as the QUESSI survey and other surveys.. give the med students the leg work as part of their training....give them training about mcas so they could analyze them in discussion rounds, etc. If those patients haven't gotten any possible diagnosis of MCAS....the students could give them a possible explanation.
Wow! Like sitting at the feet of Plato in ancient Athens as he philosophises on our woeful knowledge of reality. However, ignorance is bliss and where MCAS medicine is right now is very depressing - with decades of research ahead. Our children and grandchildren will be the ones who benefit.