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

[maybe some day]

At this point it feels like a ponzi scheme. More ppl, more money needed, no cure in sight.

For this reason, I stopped donating

 

[jaybee00]

It’s not a Ponzi scheme. It takes time and money. For Cystic Fibrosis they found the gene in 1989 but didn’t have a good treatment till this year. And total Research expenditure was somewhere between 500 million to 1 billion USD.

https://www.google.com/amp/s/www.wa...a-8292-c46ee8cb3dce_story.html?outputType=amp

 

[Canned]

I wish they would do a german research center with Dr Prusty. If his findings are correct, he has just made more progress with one paper then omf did in 5 years. Or am I wrong? Plus they would definitely raise more money with Prusty in their team.

@MonkeyMan even if, this would mean 5 years and up of development. I would much more prefer it that we use existing drugs and find out what works now. Aka back to Rons abandoned electric assay. Either he doesnt believe in his own invention and words or they dont tell us the whole story.

Agreed. And they have already identified potential drugs. I dont understand what they are waiting for.. SS-31 is not gonna learn how to speak and tell us if it works. Just do a small 10 people open lable study..

 

[Badpack]

@jaybee00 yea i know, it surely was more of an exaggeration. I know that good science takes time and a lot of money. The thing im really questioning is OMFs public relations. Asking for more money at every corner without providing any new substance where the old money went and teasing us with populistic headlines like BREAKING NEWS (when nothing new or of worth is created) and LOOK AT THOSE NEW MEMBER OF US WHO WILL BEAT THIS DISEASE (when its only a PhD student which 100% only cares about his own medical future and post doc time)

 

[JES]

At this point it feels like a ponzi scheme. More ppl, more money needed, no cure in sight.

There are potential cures in sight from OMF research, at least three drugs have been identified to correct the abnormal impedance in the nanoneedle. I'd seriously consider elamipretide tomorrow if it was available. I'm not aware that Prusty has identified any drug candidates yet, so I don't see how we can claim he is any closer to a cure.

 

[JES]

Agreed. And they have already identified potential drugs. I dont understand what they are waiting for.. SS-31 is not gonna learn how to speak and tell us if it works. Just do a small 10 people open lable study..

OMF are not doing the trials themselves, they are researchers working in a lab, so they need to co-operate with some clinic willing to do this. As we have seen lately with coronavirus treatments, even if you have all the research in place, the practical bit is usually the slowest.

 

[MonkeyMan]

It’s not a Ponzi scheme.

I think the point is, because of poor communication, particularly about testing of potential treatments, along with "rah rah" announcements about this hire or that collaboration, the OMF can FEEL like a Ponzi scheme. We all know Ron is deeply invested in finding answers, but the organization's treatment-focused updates are way too infrequent, so we continue to be in the dark about stuff that was hyped years ago, like the nanoneedle.

 

[raghav]

Initially OMF said they have identified a big molecule which was blocking the mitochondria from functioning. There was a lot of fanfare that the molecule will be identified. But nothing came of it. Then it was the turn of nanoneedle which was supposed to be a game changer and nothing came out of it. Then there was the hype of metabolic trap and nothing has come out of it. We are frankly fed up with all this. Can you state something and walk the talk ? We are very desperate for a treatment for our fatigue We are not asking for a cure. Can you not atleast state what you are doing now. You show a 100 sec video where two rookie Ph.D students show us a machine and say the word "Kynurenine" and that is it. Why cant you say what samples you are going to test in the mass spectrometer (what cell types ) and the expected outcome date ? You are playing hide and seek with us. You say tons and tons of research is going on but you are not stating things like what you are experimenting and the expected likely outcomes and if it fails give us the failed test results. We will be happy to know that you are truly doing something.

OMF means Open source and you are so tight lipped. We want you to share the experiments and their results good or bad with researchers who are not so fortunate to be part of the working group. Instead you are working like Closed Medicine Foundation (I think you should change your name to CMF). On one hand you say we are not funding you sufficiently and on the other hand you are going on creating more and more collaborations. Both cant be true. You are conflicting your own statement. Please come clean and give us a detailed status report. we dont want 5 minute videos. We want detailed explanations of what you have been doing all these years. I am sorry to be sounding rude but you dont seem to get the point.

 

[Rufous McKinney]

Our current data show that only a small fraction of cells need to be latently infected with HHV-6 to trigger a secretory phenotype that is strongly protective against some of the RNA and DNA virus infection in neighboring and distant cells lacking HHV-6 DNA

I hope to someday understand more of all this.

Meanwhile- is there something "adaptive" about development of this antiviral phenotype?

And what does this mean at this co-incident time when we are possibly exposed to COVID-19?

 

[MonkeyMan]

Initially OMF said they have identified a big molecule which was blocking the mitochondria from functioning. There was a lot of fanfare that the molecule will be identified. But nothing came of it. Then it was the turn of nanoneedle which was supposed to be a game changer and nothing came out of it. Then there was the hype of metabolic trap and nothing has come out of it. We are frankly fed up with all this. Can you state something and walk the talk ? We are very desperate for a treatment for our fatigue We are not asking for a cure. Can you not atleast state what you are doing now. You show a 100 sec video where two rookie Ph.D students show us a machine and say the word "Kynurenine" and that is it. Why cant you say what samples you are going to test in the mass spectrometer (what cell types ) and the expected outcome date ? You are playing hide and seek with us. You say tons and tons of research is going on but you are not stating things like what you are experimenting and the expected likely outcomes and if it fails give us the failed test results. We will be happy to know that you are truly doing something.

OMF means Open source and you are so tight lipped. We want you to share the experiments and their results good or bad with researchers who are not so fortunate to be part of the working group. Instead you are working like Closed Medicine Foundation (I think you should change your name to CMF). On one hand you say we are not funding you sufficiently and on the other hand you are going on creating more and more collaborations. Both cant be true. You are conflicting your own statement. Please come clean and give us a detailed status report. we dont want 5 minute videos. We want detailed explanations of what you have been doing all these years. I am sorry to be sounding rude but you dont seem to get the point.

@raghav, your comments above about the OMF are spot on. Well said.
@Ben H @Janet Dafoe (Rose49) - please be aware that a lot of us feel this way. We love Ron and the team he has assembled, but the OMF is leaving us in the dark, and it is very frustrating.

 

[maybe some day]

@raghav, your comments above about the OMF are spot on. Well said.
@Ben H @Janet Dafoe (Rose49) - please be aware that a lot of us feel this way. We love Ron and the team he has assembled, but the OMF is leaving us in the dark, and it is very frustrating.

I have to agree on that, but remember that the Bay Area is under shelter-in-place. Any news from the end of March through the first week in May likely will not happen.

 

[Mary]

MODERATOR'S NOTE: POSTS 472 through 503 HAVE BEEN MOVED TO A NEW THREAD PERTAINING TO THE PAPER PUBLISHED 4/1/20 BY DR. PRUSTY: Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

 

[raghav]

I bought a handful of kuding tea. Should be here next week. Lets see if a simple tea can heal a now 6y long disease haha [\quote]

@Badpack Did the kuding tea arrive (without virus ) ?

 

[Badpack]

@raghav nope. Ordered from 3 different sources. Nothing arrived yet. Waiting for 6 weeks now.

 

[sebaaa]

@raghav and @Badpack, I also ordered shan-lv kuding tea but I haven't received it yet. It's been almost 3 weeks.

 

[Badpack]

@sebaaa
Im pretty sure shan-lv kuding is the wrong one. Ilexgenin A is named after the group of ilex plants ( extracted from Aquifoliaceae ). But shan-lv kuding is Ligustrum robustum. You should need Ilex kaushue, Ilex kudingcha or Ilex hainanensis Merr.

 

[sebaaa]

@sebaaa
Im pretty sure shan-lv kuding is the wrong one. Ilexgenin A is named after the group of ilex plants ( extracted from Aquifoliaceae ). But shan-lv kuding is Ligustrum robustum. You should need Ilex kaushue, Ilex kudingcha or Ilex hainanensis Merr.

"Its leaves are used as a traditional tea product, known as Shan-Lv-Cha." Can you show me the link where you bought it from? I got mine from ebay.

 

[wastwater]

Another wildcard orphan drug carglumic acid
https://en.m.wikipedia.org/wiki/Carglumic_acid

 

[andyman123]

Looks like Bhupesh and whatever other colleagues have finally figured out the molecular mechanics of CFS. This fits in with the metabolic trap and the usual onset caused by a viral infection or an infection that can transactivate latent infections we may already have.

We may be able to take mitochondrial drugs to counteract these effects but until we start completely curing and eradicating viruses from the herpes family and others it's going to keep being a problem.

When they completely eradicate herpes: MS, rheumatoid arthritis, many different vascular diseases, blood carcinomas, bipolar disorder, severe depression, keratitis, bell's palsy, and on and on are simply going to mostly go away if not go away completely.

This video brings molecular proof into what these viruses can do. Unfortunately for crispr to catch up to this is probably still 10-20 years off for complete eradication. Crispr is really progressing still. I hope there is a cure soon as I know the hell many of you on here are in.

 

[wabi-sabi]

It sounds like he's onto the "something in the blood"!