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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Badpack

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@Mary i have been sick for 6 years now. Before Cfs i got the flu twice a year. On the point nearly every year on the same time. After getting Cfs nothing. 6 years now without any kind of sickness (well, besides Cfs...), interesting to finally get closer to the answer of some things.
 
Rufous McKinney

Rufous McKinney

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When I was mild (for decades) I"m sure I was catching stuff...but now that I'm worse the last several years, its far less so (except my stomach flu issue...wonder if I carry something that flares).
 
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RL_sparky

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raghav said:
Thanks @RL_sparky for posting that. I was not expecting that video so quickly. BTW I got a mail from Prusty, he clarified that the first paper is well on its way and he is working 18 hrs a day in the lab. There is a scare that they may close the lab due to corona virus scare. So he is trying to finish the paper at the earliest. He has only a PG student and UG student as assistants. His two Ph.D students have completed their course and taken up jobs. So he has to do most of the work himself. So lets wait. Have trust in him. He will not let us down. Let me view the video posted.
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Wow. Thanks for sharing that with us. He is an incredible person.
On another note. I gave blood at the Stanford Genome lab today. There expecting to get the order at some point to close the lab. Everyone stay safe.
 
paul80

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I just wanted comment on the cold virus with m.e discussion earlier. I used to never get cold viruses for years, now i get them very often, but my M.E was more moderate before and more severe now. So i doubt i can be in two subgroups. Has anyone else been through both phases?

I don't think i've ever had the actual flu, a lot of people just refer to cold viruses as the flu though, i've noticed.

I hope OMF can help Dr Bhupesh, give him funding and support.
 
xebex

xebex

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@paul80
Intersting, yes maybe not a subgroup but rather an immune shift but the immune shift isnt necessarily indicative of severity. Some severe people never catch anything and others more mild catch everything. I’ve fluctuated from mild to severe and now moderate and never had an immune shift in that time BUT before I got ME I had a lot of nasty colds and once I got ME they disappeared.
 
paul80

paul80

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Bhupesh said:
It seems that our results are misinterpreted. Our experiments only show that CFS serum provides a strong antiviral state. It does not mean that only HHV-6 can cause that. It is very much possible that another virus including influenza or EBV might induce similar state
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So that means the other 60% of patients might have the same "issue" but with EBV or something. Or am i getting confused here?

I wonder if people will have the EBV one if they started with Mono.
 
bertiedog

bertiedog

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Mary said:
I think people who get sick all the time - like me, a majority of the time I have a low-grade sinus something or other - could still have ME. Prusty talks about how people with ME don't have the nutrients in their cells to support fast- growing viruses like the flu. I last had the flu 20 years ago. So I'm guessing there are slow-growing viruses and also bacteria that may be able thrive on our poor depleted cells. I know I have ME/CFS - PEM like clockwork for over 20 years.
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I am like you Mary, pick up what seems to be the same virus many, many times over the Winter but haven't had the flu since 1979 and never have the flu injection.

Its happened to me again today. Two weeks ago started with a nasty virus which first started in my throat and nose and progressed to a mild sort of respiratory cold eventually hitting my larynx as it seemed to move down. Had massive sweats and nil energy until the end of last week when I started to get some energy back and felt better. However today woke up lightheaded and very poor energy and soon apparent the very sore throat was back, gland starting to reappear under my ear and feel sh.. This virus I get is identical every time I get it.

Weird or what.

Pam
 
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raghav

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Folks, NIH has an event on April 22nd
NIH ME/CFS Special Interest Group Public Lecture
April 22, 2020
12:30-1:30 p.m. ET
Masur Auditorium, Clinical Center/Building 10, NIH Main Campus

Is it possible for us to raise a unified voice asking them to invite Prusty to give a lecture on his latest findings ? Who knows then Prusty might reveal the mystery molecule in the serum ?
 
Rufous McKinney

Rufous McKinney

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raghav said:
Is it possible for us to raise a unified voice asking them to invite Prusty to give a lecture on his latest findings ?
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Well, its doubtful he can travel to here...in person...US travel restrictions per corona-v....seem likely to continue...into April.

We do need to protect the health of our researchers. But lectures and Q and A can happen in teleconference.
 
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raghav

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Rufous McKinney said:
Well, its doubtful he can travel to here...in person...US travel restrictions per corona-v....seem likely to continue...into April.

We do need to protect the health of our researchers. But lectures and Q and A can happen in teleconference.
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I think teleconference will be fine with him. I think so. The question is how do we make it happen ? Is anybody here with that kind of influence to make NIH include Prusty's lecture in the schedule ?
 
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bthompsonjr1993

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Badpack said:
The hype is big, lets hope that he can deliver even half of it. Heard about 3-4 weeks till he can publish data. Said also something about that Cfs can maybe be treated in a 5 year timeframe.Love Dr. Prustys work. I believe in him.
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Man I love the excitement, but I am confused as to what primarily is generating it. I looked at his tweets but I'm still not sure. Could someone explain to me what the primary source of the excitement is? Is it that he has found int he serum what he thinks is causing our mitochondria to malfunction?
 
lauluce

lauluce

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bctjr1993 said:
Man I love the excitement, but I am confused as to what primarily is generating it. I looked at his tweets but I'm still not sure. Could someone explain to me what the primary source of the excitement is? Is it that he has found int he serum what he thinks is causing our mitochondria to malfunction?
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I'm asking myself the same question
 
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