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Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe
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that newsletter is great! reading it. I found this piece particularly striking:
"Over 7,000 chemicals are used in the United States at amounts of 25,000 to over 1 million pounds per year. These include pesticides, plasticizers, lubricants, flame retardants, teflons, food additives, preservatives, dyes, sunscreens, veterinary antibiotics and antifungal medication, and many others. Fewer than 5% of these have ever been tested for developmental toxicity. These chemicals have entered the human food chain, water, and air. In 2005, study conducted by the Environmental Working Group found that the umbilical cord blood of newborn babies in the United States already contained an average of 287 pesticides, pollutants and other environmental chemicals"
This is somewhat relevant to me, as I haven't identified a clear trigger for my ME which I developed in 1998, at the age of 13
"Over 7,000 chemicals are used in the United States at amounts of 25,000 to over 1 million pounds per year. These include pesticides, plasticizers, lubricants, flame retardants, teflons, food additives, preservatives, dyes, sunscreens, veterinary antibiotics and antifungal medication, and many others. Fewer than 5% of these have ever been tested for developmental toxicity. These chemicals have entered the human food chain, water, and air. In 2005, study conducted by the Environmental Working Group found that the umbilical cord blood of newborn babies in the United States already contained an average of 287 pesticides, pollutants and other environmental chemicals"
This is somewhat relevant to me, as I haven't identified a clear trigger for my ME which I developed in 1998, at the age of 13
I understand that seeing funds raised for research on gofundme can prompt suspicion, but Dr. Prusty is a legitimate researcher. Back in 2016 he was one of the first researchers to receive a Ramsay grant from the Solve ME/CFS initiative. You can read more about his research, why he received the grant, and what he has accomplished with it here: https://solvecfs.org/dr-bhupesh-prusty/
He has said that there is very little funding available in Europe for his particular area of study. We see here in the US that there is little government funding for studying ME/CFS, and I imagine (though I don't know for sure) that the situation is same for him in Germany.
He has said that there is very little funding available in Europe for his particular area of study. We see here in the US that there is little government funding for studying ME/CFS, and I imagine (though I don't know for sure) that the situation is same for him in Germany.
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Its even worse in Germany as there is nothing like the NIH. Government funding for studying ME/CFS ? NOPE!
Every researcher has to care for himself. If you are not backed by a big institute/department like the chief- immunulogists at the Charite in Berlin you often have to pay out of your own pocket doing research in ME/CFS
Sorry folks for my inappropriate comments regarding the legitimacy of asking patients for donations for CFS research. Its just been so long and I have donated to this and that and in the end nothing has come out of anything. I am just a frustrated patient who is becoming bitter and resentful. But I had no right to personally attack this researcher. I am sure he is well intentioned. I will stay away from the forum for a while.
As they say: if you have nothing good to say, say nothing.
My sincere apologies again and I will donate to his gofunme myself. I am bitter but there is still some hope glimmering down there in my poorly beating heart.
Good luck to all of us and especially Dr Prusty.
As they say: if you have nothing good to say, say nothing.
My sincere apologies again and I will donate to his gofunme myself. I am bitter but there is still some hope glimmering down there in my poorly beating heart.
Good luck to all of us and especially Dr Prusty.
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@hmnr asg I think it is perfectly fine to scrutinize where you are sending your money.
@hmnr asg And we all understand being bitter and resentful at times too. It's difficult to stay hopeful, but following research helps me with this.
@hmnr asg Dr. Prusty was the first researcher who found out that the serum of ME CFS patients made healthy people's cell's mitochondria fission. Rest of the researchers were so fascinated by the seahorse or whatever hitech instrument that they were just seeing the mitochondrial complexes respiration rate and proton leak and so on. Nobody as per my guess had the patience to look at the cells directly and that too after 4 to 6 days soaked in the serum of ME CFS patients. He was the guy who brought focus back to mitochondrial fission and fusion. Till then I personally thought mitochondria are etched in stone and once you have unhealthy or low mitochondrial count you are doomed. He changed all that. So I am a great fan of his. 
You must watch his presentation in April 2019 at NIH ME conference. It was a great revelation to me at least personally.
You must watch his presentation in April 2019 at NIH ME conference. It was a great revelation to me at least personally.
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I think the clarifying information here has helped all of us feel better about supporting this effort...so thanks Thread and Moderators and commentators.
I don't think that anyone should conclude that the research that has gone on until now has yielded nothing. Not specifically directed at you, @hmnr asg, but I hate seeing a lot of the criticism directed at the researchers who may not have published some breakthrough, but have nonetheless advanced the ball.
Perhaps Lipkin's initial research has or will come to nothing, but just the fact that he became interested and involved significantly advanced the ball in attracting other researchers, and helping to legitimize the disorder. Unfortunately, though it was a tremendous amount of money for us to raise, the million dollars that was raised for him was just a drop in the bucket compared to what was needed. I think even Lipkin grossly underestimated the complexity of the task. A million dollars doesn't go very far in medical research.
I'm not aware of any field where "research" advances linearly, and a researcher could hold a press briefing every few weeks and report their "progress". Progress comes in bits and pieces, advancing and retreating, and often can't even be recognized as progress until the next bit of the puzzle reveals itself. It is frustrating to watch, but it is the nature of the beast.
Those who haven't been sick so long can't fully realize how bad the state of research was 30 years ago (non-existent) compared to the many avenues being explored today. There's reason for hope, but there isn't going to be something to report weekly or monthly.
Perhaps Lipkin's initial research has or will come to nothing, but just the fact that he became interested and involved significantly advanced the ball in attracting other researchers, and helping to legitimize the disorder. Unfortunately, though it was a tremendous amount of money for us to raise, the million dollars that was raised for him was just a drop in the bucket compared to what was needed. I think even Lipkin grossly underestimated the complexity of the task. A million dollars doesn't go very far in medical research.
I'm not aware of any field where "research" advances linearly, and a researcher could hold a press briefing every few weeks and report their "progress". Progress comes in bits and pieces, advancing and retreating, and often can't even be recognized as progress until the next bit of the puzzle reveals itself. It is frustrating to watch, but it is the nature of the beast.
Those who haven't been sick so long can't fully realize how bad the state of research was 30 years ago (non-existent) compared to the many avenues being explored today. There's reason for hope, but there isn't going to be something to report weekly or monthly.
Surely, how MAIT and TH17 cells are involved has yet to be answered, but each definitively are abnormal in ME/CFS patients. This study specifies these and other immune cell abnormalities in ME/CFS:
Edit: I just found an article on how MAIT cells are involved with autoimmune disease from Nature. This study mentions their potential as therapeutic target in autoimmune disease. Unfortunately, you have to pay to view the entire thing. As a result, I have no idea if ME/CFS is mentioned in this study.
"Mucosal-associated invariant T cells and disease"
Nature Reviews Immunology volume
Link: https://www.nature.com/articles/s41577-019-0191-y
On a brighter note, I found a free article with suggestions on how ME/CFS patients can improve our mitochondrial function naturally:
https://quitchronicfatigue.com/increase-mitochondrial-function
Here is another article with ideas on how to improve mitochondrial function:
https://naturalnewsblogs.com/natural-ways-boost-stem-cell-production/
Edit: I just found an article on how MAIT cells are involved with autoimmune disease from Nature. This study mentions their potential as therapeutic target in autoimmune disease. Unfortunately, you have to pay to view the entire thing. As a result, I have no idea if ME/CFS is mentioned in this study.
"Mucosal-associated invariant T cells and disease"
Nature Reviews Immunology volume
Link: https://www.nature.com/articles/s41577-019-0191-y
On a brighter note, I found a free article with suggestions on how ME/CFS patients can improve our mitochondrial function naturally:
https://quitchronicfatigue.com/increase-mitochondrial-function
Here is another article with ideas on how to improve mitochondrial function:
https://naturalnewsblogs.com/natural-ways-boost-stem-cell-production/
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In Argentina the government isn't even aware of the existence of ME/CFS, an anyway the funding for any kind of research has always been extremely low. Argentina is a country that only consumes and uses scientific knowledge, but it doesn't generate it :-(
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800 Euros to completion ! Latest tweet from Prusty
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There are sooo many important tweets in the thread following this tweet from Dr Prusty. So encouraging! Many replies from him too. Go have a look people!