Dr. Kumaroff’s dedication is, no doubt, why the millions missing have hope. I’m on 14yrs 🇨🇦 disability and VERY pleased about the investments being made. Kudos to Mass ME-CFS for fighting for us.
It's been so interesting over the last 6 years since I first started researching and listening to the professionals on ME, after I got my diagnosis. Hearing the progression in our knowledge of ME. Seeing disparate and sometimes contradictory research results from the past start to become more consistent over time, with improvements to the way we do thing's and the diagnostic criteria. Then seeing all these findings start to be linked together to form what is now quite a mainstream theory of what's happening....not quite complete, and still lacking root cause, but SO much closer to something that is starting to look like a reasonably decent idea of what a comprehensive theory might look like. It's incredibly exciting, and hope inspiring, I have given up dreaming of a cure, that feels too much of a big question mark. But I have alot of hope now that we might be able to find some kind of treatment options that work to reduce symptom burden and maybe improve functioning a little. That day seems tangibly close now. Maybe a few years I know, but soon maybe. Thanks for everyone who is out there doing the work for all of us.
These disorders in some ways make me think of Polio. As with so many illnesses, as I understand, a lot of people got Polio virus and were asymptomatic or mildly ill. An unfortunate percentage was permanently crippled. Polio is an enterovirus, living and destroying through the intestines. I have written many bitter comments about mystery virus outbreaks in my geographic area, for which sequelae were like ME/CFS. All I know is from observation in a small town, in sparsely populated counties. I know this is not even a drop in the statistical bucket. But anecdotally, the basic pattern of these illnesses was an onset like mild upper respiratory illness. In about 48 hours, at least for some, the GI tract was attacked, primarily intestines. After that, neurological symptoms set in for some and many never fully recovered after the neurological symptoms. Tests for influenza, when possible, were all negative. Polio destroyed the nervous system through the intestines as I understand that disease. Heaven only knows what was happening with the mystery virus(es). SARS-CoV2 has been known to affect the digestive tract. Recently a researcher said C*VID is a systemic illness, as is influenza. She said we think of these diseases as respiratory but they actually affect every part of the body and they should be called systemic. Prior to C*VID, my friends and I wondered where the old fashioned diseases had gone. What happened to basic colds, flu and "stomach flu"? We are late middle aged so maybe we have immunity against a lot of those diseases. But when we get a respiratory illness, there seems to always be an intestinal issue. We do not catch contagious diseases very often, which I think is an advantage of aging. But what we do catch tends to be horrible and months are needed for recovery. I was in shock last year when I got a regular cold that affected nothing but the nose and throat and which resolved in ten days! I am a journalist and researcher. I wrote a couple general interest articles asking what happened to the old time common illnesses and asking about new 'mystery' viruses. What are they? Are these new viruses causing more severe disease, etc? Then SARS-CoV2 happened. Interestingly, my friends and I got that early in 2020 and thankfully, it was nothing compared to the "unknown" "really tough" viral illnesses of the past several decades.
So excellent. My deepest appreciation to Mass ME/CFS and Dr. Komaroff. Now in my 31st year with ME.
Dr. Kumaroff’s dedication is, no doubt, why the millions missing have hope. I’m on 14yrs 🇨🇦 disability and VERY pleased about the investments being made. Kudos to Mass ME-CFS for fighting for us.
it means so much to me to know that you and other medical professionals) have not left us behind. Thank you ☺️
It's been so interesting over the last 6 years since I first started researching and listening to the professionals on ME, after I got my diagnosis. Hearing the progression in our knowledge of ME. Seeing disparate and sometimes contradictory research results from the past start to become more consistent over time, with improvements to the way we do thing's and the diagnostic criteria. Then seeing all these findings start to be linked together to form what is now quite a mainstream theory of what's happening....not quite complete, and still lacking root cause, but SO much closer to something that is starting to look like a reasonably decent idea of what a comprehensive theory might look like. It's incredibly exciting, and hope inspiring, I have given up dreaming of a cure, that feels too much of a big question mark. But I have alot of hope now that we might be able to find some kind of treatment options that work to reduce symptom burden and maybe improve functioning a little. That day seems tangibly close now. Maybe a few years I know, but soon maybe. Thanks for everyone who is out there doing the work for all of us.
These disorders in some ways make me think of Polio. As with so many illnesses, as I understand, a lot of people got Polio virus and were asymptomatic or mildly ill. An unfortunate percentage was permanently crippled. Polio is an enterovirus, living and destroying through the intestines.
I have written many bitter comments about mystery virus outbreaks in my geographic area, for which sequelae were like ME/CFS. All I know is from observation in a small town, in sparsely populated counties. I know this is not even a drop in the statistical bucket. But anecdotally, the basic pattern of these illnesses was an onset like mild upper respiratory illness. In about 48 hours, at least for some, the GI tract was attacked, primarily intestines. After that, neurological symptoms set in for some and many never fully recovered after the neurological symptoms. Tests for influenza, when possible, were all negative.
Polio destroyed the nervous system through the intestines as I understand that disease. Heaven only knows what was happening with the mystery virus(es). SARS-CoV2 has been known to affect the digestive tract. Recently a researcher said C*VID is a systemic illness, as is influenza. She said we think of these diseases as respiratory but they actually affect every part of the body and they should be called systemic.
Prior to C*VID, my friends and I wondered where the old fashioned diseases had gone. What happened to basic colds, flu and "stomach flu"? We are late middle aged so maybe we have immunity against a lot of those diseases. But when we get a respiratory illness, there seems to always be an intestinal issue. We do not catch contagious diseases very often, which I think is an advantage of aging. But what we do catch tends to be horrible and months are needed for recovery. I was in shock last year when I got a regular cold that affected nothing but the nose and throat and which resolved in ten days!
I am a journalist and researcher. I wrote a couple general interest articles asking what happened to the old time common illnesses and asking about new 'mystery' viruses. What are they? Are these new viruses causing more severe disease, etc? Then SARS-CoV2 happened. Interestingly, my friends and I got that early in 2020 and thankfully, it was nothing compared to the "unknown" "really tough" viral illnesses of the past several decades.