Bhupesh Prusty - latest research study

[Boba]

It was so painful to read his reply. I had such hope in him. Its actually really devastating.

Don’t be. His Long Covid study will help a lot.

 

[Boba]

This was just recently:

 

[Hopeful1976]

This was his reply to me asking about the something in the blood and why there has been no further research on it

 

[Boba]

He obviously vented. That’s shit… He just got big money to study Long Covid. I can’t imagine he’s doing something else now. Knowing that Long Covid is ME will help.

 

[Hopeful1976]

He obviously vented. That’s shit… He just got big money to study Long Covid. I can’t imagine he’s doing something else now. Knowing that Long Covid is ME will help.

Totally shit. I really didnt need to hear it today.

 

[perrier]

When I learned of the 10 patients covid 10 Me and 10 controls study over TWO years, I realised that he was directing himself elsewhere. My family could not believe it!! Am I incorrect but did he not receive some grant that was quite substantial? Perhaps not.
This is devastating dear @Hopeful1976. I really really thank you for posting the messages.

 

[jump44]

It’s clear to me these people obviously have no clue and are throwing darts. Let’s see- they were so quick to come up
With “long covid” for a virus that was only about 4 months old at the time(I still haven’t quite figured out how that’s possible- I mean the mainstream medical establishment isn’t exactly known for its flexibility and curiosity) but I guess Covid is the the virus to end all viruses and capable of anything . Also cfs/me been around for decades and you can still barely get taken seriously about it. So much hypocrisy and duplicity.

 

[Boba]

When I learned of the 10 patients covid 10 Me and 10 controls study over TWO years, I realised that he was directing himself elsewhere. My family could not believe it!! Am I incorrect but did he not receive some grant that was quite substantial? Perhaps not.
This is devastating dear @Hopeful1976. I really really thank you for posting the messages.

He received at least 1 Mio for Long Covid. I‘d still argue that it is the same direction. This is going to help. I‘m a Long Hauler with fatigue and PEM.

 

[Hopeful1976]

When I learned of the 10 patients covid 10 Me and 10 controls study over TWO years, I realised that he was directing himself elsewhere. My family could not believe it!! Am I incorrect but did he not receive some grant that was quite substantial? Perhaps not.
This is devastating dear @Hopeful1976. I really really thank you for posting the messages.

I just felt the community needed to know. I hate bringing sorrow and dejection, truly. I've had this horrid illness 25 years and with Bhupesh and his pictures of the 'something' affecting the mitochondria, saying he had found something, for the first time ever, I actually felt hope. Now I feel utterly despondent. So let down. I'm sorry everyone.

 

[perrier]

I just felt the community needed to know. I hate bringing sorrow and dejection, truly. I've had this horrid illness 25 years and with Bhupesh and his pictures of the 'something' affecting the mitochondria, saying he had found something, for the first time ever, I actually felt hope. Now I feel utterly despondent. So let down. I'm sorry everyone.

I feel as you do, dear Hopeful. I recall that before Christmas he said he was going to announce something, and many of us felt he would announce some finding affecting the mitochondria, and then Christmas came and there was nothing, a deflated balloon. So, I knew then something was up. And the recent statements suggest this. And his project is for two years and only a such a tiny number of ME patients, and not even severe ones. Then what, after those two years, 20 patients will need to be studied, and then 2 years after that, 40 patients, and on it goes. Forgive me my utter despair about all this today.

 

[Hopeful1976]

I feel as you do, dear Hopeful. I recall that before Christmas he said he was going to announce something, and many of us felt he would announce some finding affecting the mitochondria, and then Christmas came and there was nothing, a deflated balloon. So, I knew then something was up. And the recent statements suggest this. And his project is for two years and only a such a tiny number of ME patients, and not even severe ones. Then what, after those two years, 20 patients will need to be studied, and then 2 years after that, 40 patients, and on it goes. Forgive me my utter despair about all this today.

I felt exactly as you did when you heard. I had the same conversation with my parents. Its devastating. I am sending my best love to you today.

 

[Martin aka paused||M.E.]

I feel as you do, dear Hopeful. I recall that before Christmas he said he was going to announce something, and many of us felt he would announce some finding affecting the mitochondria, and then Christmas came and there was nothing, a deflated balloon. So, I knew then something was up. And the recent statements suggest this. And his project is for two years and only a such a tiny number of ME patients, and not even severe ones. Then what, after those two years, 20 patients will need to be studied, and then 2 years after that, 40 patients, and on it goes. Forgive me my utter despair about all this today.

Today is the day I lost hope 🙏

 

[Reading_Steiner]

I thought his new project that he got all the money for was based on / incorporates the stuff he said he found last year, what the fuck ?

 

[ruben]

This is quite disheartening. However, I did put a post on here in February this year about a science programme on BBC2 in UK. It was all about Covid. But the last 15 minutes or so there was an interview with Dr. David Strain. He has been studying ME/CFS for a long time apparently. He is now working on the potential links between the two.(ME/CFS and long covid). This programme can be seen on BBC iplayer. As I said last 15-20 minutes. So maybe there's some hope there.

 

[Rufous McKinney]

Oh no, he is one of the brightest stars at the sky of ME research. Unfortunately he decided not to accept money from patients anymore.
another hope lies on his death bed

This is horrible....and somehow not making sense to me.

Prusty just did an interview about two weeks ago. He has two major sources of funding currently to work on long haul and ME related work. Including can hire a post doc.

He did not share much further in that interview. He smiled alot and seemed quite happy about- the upcoming work which should be helpful to our general cause.

But maybe its not the funding to continue his other HHV-6 type/mito specific work- and so there he is frustrated. I know he does not like asking the patient community for money.

 

[Oliver3]

This is horrible....and somehow not making sense to me.

Prusty just did an interview about two weeks ago. He has two major sources of funding currently to work on long haul and ME related work. Including can hire a post doc.

He did not share much further in that interview. He smiled alot and seemed quite happy about- the upcoming work which should be helpful to our general cause.

But maybe its not the funding to continue his other HHV-6 type/mito specific work- and so there he is frustrated. I know he does not like asking the patient community for money.

I thought he was under the tutelage of Bob naviaux? I wonder what's happened

 

[Rufous McKinney]

This is a brief summary somebody wrote of Dr. Prusty's latest public statement on what he is up to: From the May 2021 interview.

sorry this was posted under the video, I did not note who wrote it:

"I've done a transcript of Dr. Bhupesh Prusty's interview, using the subtitles from Youtube.

Main take-aways for me were that he received two grants for these two projects:

1. A two-year project, funded by ME Research UK with ~270,000 GBP, with a focus on finding "autoantibodies that can target mitochondria for dysfunction"

2. A three-year project, funded by Amar Foundation (US) with 900,000 US$, with a focus on a "unique experimental approach" to "understand long-covid and the relationship of long-covid with ME/CFS"

According to Dr. Prusty, science is "on the right path" and he suspects some exciting developments in the next 3-5 years."

 

[Rufous McKinney]

"on the right path" and he suspects some exciting developments in the next 3-5 years."

but Yes still its discouraging. I'm going to be even older in 7 days.

It seems this is our lives for now, and this is what we must cope with and deal with.

Coming here, we can discuss our ideas and our hopes. There is ALOT going on so something could break thru this impasse- at any moment.

 

[seamyb]

I just felt the community needed to know. I hate bringing sorrow and dejection, truly. I've had this horrid illness 25 years and with Bhupesh and his pictures of the 'something' affecting the mitochondria, saying he had found something, for the first time ever, I actually felt hope. Now I feel utterly despondent. So let down. I'm sorry everyone.

It reads a bit like "it's very difficult to have ME.... as your topic of research".

Finish your sentences earlier boyo.

 

[Hopeful1976]

It reads a bit like "it's very difficult to have ME.... as your topic of research".

Finish your sentences earlier boyo.

Sorry?