Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

[Rufous McKinney]

This is one of my fears with what he said in January where he said this was the year of the cure. Unless he was sitting on something that genuinely worked that was false hope. I can't help but think now this update is the exact opposite of his new years statements

Nothing seemed to come up related to the special online journal Dr. Prusty was going to edit and produce.

Something bureaucratic is giving him trouble.

THey also follow the money streams- so at least he is GETTING quite a bit, and lets imagine a new highly motivated GRaduate Student appearing.

Thats where I got my best- researchers- if you can get a smart Grad Student to commit to working on your issue- you can start to get somewhere.

 

[BrightCandle]

prusty and whitney said that last winter?

yes i hear you.

Prusty said it and so did Whitney. If it had been either one in isolation I wouldn't have put too much stock in it, but the pair of them saying it built a lot of hope in people that they had something concrete.

 

[bensmith]

Wow my goodness i did not know know. That sucks has possibly shifted gears.

 

[Rufous McKinney]

Prusty said it and so did Whitney. If it had been either one in isolation I wouldn't have put too much stock in it, but the pair of them saying it built a lot of hope in people that they had something concrete.

Prusty was making considerable progress last fall on issues like: finding HHV-6 in brain and gut tissue, finding fragmenting mitochondria. He had several comments about: Positive biomarkers...things which proved to accurately predict- thats an ME patient, different from healthy controls.

But it makes some sense to focus on this Long Haul/ME comparison at the present time, and he has money to do so. Its makes sense we should be able to: capture the moment somebody- becomes trapped or reduced to PEM.

That that will also contribute to diagnostics. And its totally timely and keen interest internationally.

ALSO- think about what it means in a publicity sense- this german Virolgist, Dr.Prusty who is VERY behind helping cure ME/CFS.- will definately figure out Something Publishable.

And every other researcher in the world who is interested in Long Haul Covid- will know of Prusty and his work on ME CFS!

 

[junkcrap50]

Prusty said it and so did Whitney. If it had been either one in isolation I wouldn't have put too much stock in it, but the pair of them saying it built a lot of hope in people that they had something concrete.

Wow my goodness i did not know know. That sucks has possibly shifted gears.

Apparently Whitney says it every year. Kind of like, "This year's the one! I can feel it!" type message. I took it the wrong way too initially. I don't know about Prusty's comment.

EDIT: I was told by someone on Phoenix Rising that he says this general message every year around New Years, when I asked about it. That person's post was deleted in its thread by the mods so I can't link to it.

 

[Rufous McKinney]

Apparently Whitney says it every year. Kind of like, "This year's the one! I can feel it!" type message. I took it the wrong way too. I don't know about Prusty's comment

Most humans are hopeful, even if we fall into the roadside ditch periodically. Whitney has to remain optimistic as the alternative- doesn't work. Imagine Ron Davis has to show up at the lab and DO all that, and keep at it. and keep himself going.

But we aren't alone...we have Australians busy, and Canadians, and Swedes.

 

[wigglethemouse]

Apparently Whitney says it every year. Kind of like, "This year's the one! I can feel it!" type message. I took it the wrong way too. I don't know about Prusty's comment.

Guys, please be accurate with what you say other people said - use the quote box to report what they actually said and provide context. Whitney is not a researcher and had just started writing and using the internet one year ago so please don't say he always says that every year.

 

[keepontruckin]

Very true. Wigglethemouse. We must not misquote people.

 

[junkcrap50]

Guys, please be accurate with what you say other people said - use the quote box to report what they actually said and provide context. Whitney is not a researcher and had just started writing and using the internet one year ago so please don't say he always says that every year.

Here is Whitney's post that I think @BrightCandle was referring to, as at the time many people were asking questions about it. Other research news from Prusty finding the "something in the blood" was made around the same time. : https://www.facebook.com/whitneydafoe/photos/a.126919172179117/241956014008765.

"Happy Cure Year!"

"Out With The Old In With The Cure!"

That’s all I got.

Maybe some of you can add your own drunken "New Years Slogans For The Cure" in the comments.

I am really hoping this will be the year we are all released from this nightmare. Things are all coming together for that to be a legitimate possibility. 2021 could be the year that gets recorded in the history books when an obscure, misunderstood illness not only became legitimized but millions of people came out of the woodwork all around the world proving to have whatever ME/CFS is called then and get cured all at once. And the history of our suffering finally saw the light of day as we all moved into the light ourselves and rejoined the world of human beings once again.

The problem isn't our lack of context being misleading. But rather Whitney's statement itself can be (and was) easily misinterpreted/read in two ways, as implying he knows something big we don't and that it is upcoming. Several people's posts on PR and Facebook interpreted in the same way as BrightCandle post. Unfortunately, the person whose post informed me that Whitney writes some combination of "cure" and "year" every New Year as a hopeful, optimistic message was deleted by the mods from its thread. I would have linked it.

I totally understand being optimistic and hopeful, and I'm glad Whitney is. We have to be; the alternative is too crushing. But people have read his statement the wrong way, being too hopeful themselves that a big discovery was imminent .

 

[MonkeyMan]

I totally understand being optimistic and hopeful, and I'm glad Whitney is. We have to be; the alternative is too crushing. But people have read his statement the wrong way, being too hopeful themselves that a big discovery was imminent .

Well, if Whitney's dad's hypothesis proves to be on target, Whitney's optimism may actually turn out to be justified!

 

[Dan_USAAZ]

How could a virus get into the brain and yet no viral DNA get back out into the bloodstream?

While it appears to be the exception rather than the rule, it is not uncommon.
This is one example from a Mayo Clinic study:

“Of interest, the plasma PCR was HHV-6 negative in two patients in spite of being HHV-6 positive in the CSF. “

 

[bensmith]

Well, if Whitney's dad's hypothesis proves to be on target, Whitney's optimism may actually turn out to be justified!

yeah but like, the implication wasnt really that i dont think. At least like junk said, how i read it. It felt more breathrough to me tbh. And that just was not the case. To my ubdersrandinf he said a breakthroigh coild happen. Yes it always could happen. Why would this year be any different unless implied progress which has not been announced if it has been made. Basically exact same position as last year.

and it seems most people read it this way from what i could tell.

i think he did it so people wouldnt kill themselves. Seems like a nice thing to do, but breakthrough doesnt seem anymore likely this year than last. But i really wouldnt know im no scientist.

 

[Oliver3]

yeah but like, the implication wasnt really that i dont think. At least like junk said, how i read it. It felt more breathrough to me tbh. And that just was not the case. To my ubdersrandinf he said a breakthroigh coild happen. Yes it always could happen. Why would this year be any different unless implied progress which has not been announced if it has been made. Basically exact same position as last year.

and it seems most people read it this way from what i could tell.

i think he did it so people wouldnt kill themselves. Seems like a nice thing to do, but breakthrough doesnt seem anymore likely this year than last. But i really wouldnt know im no scientist.

Pure speculation tho on all sides. It's frustrating as hell

 

[bensmith]

Its an ambiguous post. So?

 

[Rufous McKinney]

Why would this year be any different unless implied progress which has not been announced if it has been made. Basically exact same position as last year.

metabolic trap issues are more solidly demonstrated as likely at play this year, than a year ago.

We have a means to test existing substances, we did not have before.

It would just be real nice to get past the delaying obstructions.

 

[Oliver3]

Its an ambiguous post. So?

So pure speculation as I said..couldn't be clearer

 

[Rufous McKinney]

Oh I wish we could get an update from Dr. Prusty......