Research news from Bhupesh Prusty

The full tweet:
MIXED UPDATE!!! Dear ME community. Last year, we formed a team of 10 European PIs and applied for the first-ever opportunity to get funds for dedicated ME work. This funding call was not specifically meant for ME research. We fought hard and crossed 2-stages of the selection process to be one of the best ten projects out of the 115 applications. However, we lost 1,5 marks from a total of 15 and could not get selected for the funding. We are now placed in the reserve list and are hoping that either some other groups will back out of funding, or the European Council will put some additional research funds that can be given to us. I feel that this information should reach the community so that everyone knows about our seriousness, dedication, and hard work to solve this health issue.
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A couple of years ago, the news from Dr Prusty suggested they were close to a breakthrough based on EBV and mitochondrial fragmentation (the science was beyond me). Does anyone know what happened to that? Much of this sounds like a new venture.
 
Trish said:
As far as I know the big reveal of his discovery he promoted on social media was presented in the paper discussed on this thread:

Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al
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Thanks.

I had the familiar sinking feeling of Realising that I written quite a long and thoughtful post on that thread critiquing the pre-print. It was only last year :-(.

But if that was it, it doesn’t amount to much and makes you you wonder where all the hype was coming from. I know researchers like to share their enthusiasm, but I don’t think it’s fair* on patients to raise expectations and hopes so high unless you’ve got something fairly solid.

* Though bear in mind that I am now officially a grumpy old man.
 
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Simon M said:
I know researchers like to share their enthusiasm, but I don’t think it’s fair* on the patients too raise expectations and hopes so high unless you’ve got something fairly solid.
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A few years ago he tweeted the results of an experiment the he had carried out earlier the same day announcing that he had found two factors in the blood that were likely causing ME. Nothing came of it.
 
Simon M said:
Thanks.

I had the familiar sinking feeling of Realising that I written quite a long and thoughtful post on that thread critiquing the pre-print. It was only last year :-(.

But if that was it, it doesn’t amount to much and makes you you wonder where all the hype was coming from. I know researchers like to share their enthusiasm, but I don’t think it’s fair* on patients to raise expectations and hopes so high unless you’ve got something fairly solid.

* Though bear in mind that I am now officially a grumpy old man.
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I feel researchers are creating hype to pull in funding. At least some of them. Giving the deplorable level of funding the disease is getting I somewhat get it. Most of these hypes only move the field forward marginally, if at all. So I've learned not to expect anything. I guess new patients might get pulled in and let down.

It's one of the reasons I only send my money to the big consortia, Polybio and OMF at the moment. Let them discern if there's any value in some of the research being hyped or if there isn't.
 
John Mac said:
A few years ago he tweeted the results of an experiment the he had carried out earlier the same day announcing that he had found two factors in the blood that were likely causing ME. Nothing came of it.
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2020:
Always keep in mind that when I say one thing, it actually tells you that I know 10 things. I don’t open my mouth until unless things are tested repeatedly under many different conditions.
https://twitter.com/user/status/1233520944645365761
 
The European Parliament passed a resolution to support ME Research, which was a huge win for many patients and patient organizations. However, for several years, there has been no funding for ME at the European level. Our project cleared the evaluation and has been placed on the reserve list. We are hoping for some extra funds to be available for ME research. I don’t understand why there is such a double standard. Where is that support for ME research from the European Parliament?

https://twitter.com/user/status/1869495256732811330
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https://twitter.com/user/status/1869510952648847656
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A ME patient asked me a curious question today. She wanted to know how I spent 300K of research funding provided to me by BMBF for 3 years. She was curious as 300K is a lot of money. I realized that the public needs to learn the nuances of the funding system and scientific research. I told her that 300K in research funding in Germany means 100K per year. Out of this 100K per year fund, 20K goes to the university as overhead costs. This budget is for the university. To do full-time research, we need to hire students. The annual salary of PhD students in Germany is roughly 48K. After deducting another 2K for publications or conferences etc, we have approximately 30K left for research. This particular project requires a costly experimental approach (mass spectrometry) for which we have a dedicated expense of 15K per year that goes directly to the proteomic core facility. So, I am now left with 15K of funds for all other research activity, including consumables, which is roughly 1250 Eur per month. In a simplified term, I have less than 42 Eur per day of funds for daily lab research activities. I guess you don’t need a big imagination on how to spend 42 euros per day on medical research. It is very important to remember this number (42 eur per day of research fund) that we have for a breakthrough research.
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What do you use the 42 € for, as you have said that staff, mass spectrometry + consumables are already deducted?
Reimbursement of the participants costs (traveling, daily allowance) is usually not offered...
Other tests? Mice/Rabbits? #research #costsbreakdown #MECFS

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Consumables, reagents, sample collection, experiments everything is done in this 42 eur per day. We mostly don’t use funds for traveling except for PhD students. We also don’t get daily allowances from project funds.
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https://twitter.com/user/status/1865140669913727313
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The hit-and-trial method of therapy, where you read a few papers and decide to try a particular drug, will never work. Research is the key to treatment. However, funds are needed to conduct further research. Every successful experiment gives a satisfying answer but opens up ten more interesting questions that must be followed. The dilemma is how? ME and long COVID are not fancy clinical topics that attract attention and funding. In many developed countries, fundamental scientific research is not considered essential for solving clinical questions.

On top of that, if you are not a big name, your chance of getting funds is minimal. Moreover, there is a new fancy trend in scientific funding. Even after you compete and qualify for funding, funding agencies are straightforward in saying that they don’t have enough funds to support every qualified project. So, how do we proceed? My PhD supervisor used to say, ‘Beg, Borrow, Fight…everything is allowed in science’.
I am searching for a billionaire to invest a few million to create better health for the next generation. Suppose someone gives you experimental results that answer all the major questions about ME or long COVID, including PEM, fatigue, immune dysfunction, mitochondrial dysfunction, etc. Will you invest 10 million in research for the next 5 years so we can have an intervention? I heard people spending several hundred million going to space and winning elections. There will likely be a few who will invest in this mega high-risk, high-gain project. Desperate times call for desperate measures.
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https://twitter.com/user/status/1876081463059415117
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I am going to spend 2 weeks in Norway this June traveling between Bergen and Kristiansund. Even though it will be family time, I would love to meet some of you for a few hours, if possible. It’s always great to interact with all of you. I did this a couple of years back in Belfast and it became a memorable afternoon for me. If there are any ME patient community in Bergen area and would like to meet me formally or informally, let me know by email.
 
We are going to submit a new paper very soon with more data on this topic. In simple words, ME/CFS has many features that makes it look much different than long COVID. However, this can simply be because of the differences in time frame of the disease.

The molecular signature between ME/CFS and long COVID can’t be compared easily as majority of the ME/CFS patients accumulate secondary biological features over time. It seems that how the body adopts to the stress of the disease over time makes it different.

A freshly diagnosed ME/CFS patient (Covid- induced) may not look the same as a 5 year old ME patient at molecular level. So to answer your question, it seems to be convergent.
https://twitter.com/user/status/1920862233891922275
 
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