Research news from Bhupesh Prusty

FYI @ME/CFS Skeptic

 

Verbatim transcript of Prof. Bhupesh Prusty’s presentation to the Fatigatio E.V Research Seminar – 14th Sept. 2024
https://docs.google.com/document/d/1T79bGDR1w31zHhS39AXz3wDyhlmvwadg/mobilebasic

 

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.

 

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.

 

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.

 

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.

 

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?

 

We are leaving “X” in 2025

 

Are they moving to Bluesky?

 

Update:

 

Last few tweets are from the last couple of months.

 

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.