Research news from Bhupesh Prusty

[JemPD]

To be fair, he might have to publish some findings before getting ethical approval for further tests on inactive controls (tetraplegics? teenagers?),

but has he actually published these findings? I'm under the impression he's just publicly chatting about them, without all the details so nobody can really dig into the findings, & announcing them in teaser posts on twitter.

If theyve been published in a peer reviewed journal then fair enough, i take it all back. (not that peer review means much these days but YKWIM)

 

[belbyr]

I have listened to the interview. It does sound hopeful that they are on to something real.
As a side comment when asked about microclots he thinks they are a downstream effect, so trying to clear them with apheresis will only be a temporary thing, and not get to the root of the problem.

I might be wearing a tinfoil hat, but I think it's interesting how Prusty comes out with a supposed biomarker... Then, Robert Phair drops his Itaconate shunt hypothesis shortly after.

 

[Trish]

He's writing it up for publication. I agree it's not a good way to release information. I wish he would stay quiet until publication too.

 

[sneyz]

I might be wearing a tinfoil hat, but I think it's interesting how Prusty comes out with a supposed biomarker... Then, Robert Phair drops his Itaconate shunt hypothesis shortly after.

I believe it was IDO metabolic trap hypothesis that got ditched. The itaconate shunt hypothesis is still on the table from my understanding, and it connects well with Prusty’s work (supposedly). Correct me if I’m wrong!

 

[SNT Gatchaman]

He's writing it up for publication. I agree it's not a good way to release information. I wish he would stay quiet until publication too.

Not ideal, but perhaps realpolitik? He's stated that he wants everyone to be already thinking about the possible/related mechanisms, and so primed for discussion once published. It's building buzz, in a similar way to movies having teaser trailers and cast interviews. He seems to want this scientific finding to make a splash and not be deliberately or passively ignored, eg with the influence of certain vested interests. I imagine he well knows the history of ME and how generally science and politics can not be separated - but particularly with this disease.

I would expect that once the preprint is posted or the conference presentation made, the findings will be all over social media and then rapidly into general media.

Yes there is a risk. If it's a bust that will be yet another brutal blow to us all, me as a newer person probably less than many, so my perspective will certainly not be held by others. But he sounds confident in the scientific observations and that the model makes sense. I look forward with excitement. He did note that discussing early and incompletely on social media also had a downside for him, and that being attacked when revealing data was demoralising.

 

[Mij]

but has he actually published these findings? I'm under the impression he's just publicly chatting about them, without all the details so nobody can really dig into the findings, & announcing them in teaser posts on twitter.

Dr Prusty hopes to publish his findings on this in the next month, and will present his model at the 12th Invest in ME Research Biomedical Research for ME Colloquium #BRMEC12 and 15th International ME Conference #IIMEC15 2nd June. Patients are welcome to attend.

https://www.tlcsessions.net/episodes/episode-54-dr-bhupesh-prusty-molecular-virologist

 

[Hoopoe]

I can understand how it would be hard to contain excitement if something promising was found, and how people need to believe in the possibility of making a breakthrough to stay motivated.

 

[JemPD]

Dr Prusty hopes to publish his findings on this in the next month, and will present his model at the 12th Invest in ME Research Biomedical Research for ME Colloquium #BRMEC12 and 15th International ME Conference #IIMEC15 2nd June. Patients are welcome to attend.

https://www.tlcsessions.net/episodes/episode-54-dr-bhupesh-prusty-molecular-virologist

so why not just wait until you publish your findings?
doing this...

building buzz, in a similar way to movies having teaser trailers and cast interviews.

is grotesquely inappropriate.
If he knew how our emotions how our mechanisms for hope had been assaulted over the past 3 or 4 decades... the hope of having a life back, of being able to not just stop suffering but reverse the indescribable grief of being excluded from our lives, our friends our families, from the simple ability to go out for a coffee, or to go to a loved one's wedding/funeral, if he really understood how intolerably horrific it is to 'live' as many of us are, especially those of us who are severe & alone, and who have had our hopes raised and smashed repeatedly by researchers who tout their findings before they should.

If you've been through XMRV & everything else that raised our hopes over decades, if he understood the cruelty of swinging a key in front of the cage of tortured prisoners and then it being taken away. He would not be so cruel as to put teaser posts to 'build buzz'. Sorry i recognise he means well but its just perverse to me to be treating us this way. You're not dealing with a standard set of patients but a beaten and abused population of trapped, imprisoned desperate people. Stop toying with me please, I'm not a cinema goer.

But he sounds confident in the scientific observations and that the model makes sense.

Yes & so did Mikovitz & all the others. Thats what i mean... they are always sure. Wessely & White are confident & sure, it doesnt mean anything.

Not ideal, but perhaps realpolitik? He's stated that he wants everyone to be already thinking about the possible/related mechanisms, and so primed for discussion once published. It's building buzz, in a similar way to movies having teaser trailers and cast interviews. He seems to want this scientific finding to make a splash and not be deliberately or passively ignored, eg with the influence of certain vested interests. I imagine he well knows the history of ME and how generally science and politics can not be separated - but particularly with this disease.

my italics. I hadnt thought of it like that, but loads of things have made a splash over the yrs, i dont see how it helps to start it up beforehand, if its real & solid then the buzz will be so massive among us all that it will explode on its own. Movies that are truly excellent need no hyping or buzz building.

I hope i'm proved wrong.

 

[Hoopoe]

From what I understood he thinks that herpesviruses in bone marrow, and their effect on the cells that develop there, are key.

 

[Hubris]

I find it interesting how researchers like Mr. Prusty and Mrs. Proal make so much noise about herpes viruses, but when I contacted them about my chronic HHV7 detectable in the blood they showed zero interest.

It is kind of ironic because the main reason why nobody in the academic world takes the chronic infection hypothesis seriously is that studies showed time and time again ME patients have no detectable infection in the blood. I'm a clear outlier, i actually have that chronic infection they so desperately wish the patients had, and I have severe ME for decades, and yet they showed absolutely no interest. Makes you wonder about their true motives.

 

[RedFox]

I'm going to wait until their paper is out. We've been burned too many times by researchers hyping up their own findings.

 

[Sly Saint]

He seems to want this scientific finding to make a splash and not be deliberately or passively ignored

But the Griffith University group seem to try this just about every year, and in the end it has the opposite effect.

 

[Solstice]

I'm going to wait until their paper is out. We've been burned too many times by researchers hyping up their own findings.

I'm ready to get hurt again .

Honestly, it just feels nice that the disease is getting worked on finally.

 

[Kitty]

He seems to want this scientific finding to make a splash and not be deliberately or passively ignored, eg with the influence of certain vested interests. I imagine he well knows the history of ME and how generally science and politics can not be separated - but particularly with this disease.

I've been thinking much the same, it must be difficult to get attention when you're researching such a marginal disease. He seems to be in a far from ideal situation as regards funding and support, and some of this is presumably targeted at potential funders and/or hosts for his lab. I don't like the approach, but I get that to some extent it's the way of the world.

I'm really interested in his findings, but find it hard to get excited because trials and treatment approvals take years, and even then it seems unlikely that one approach would produce good results across the board in what might be several different conditions.

 

[Peter T]

I tend not to take such announcements seriously as so many have been made in the past, but come to nothing.

Even if someone has got to the beginning of understanding the aetiology of ME as @Kitty says I “find it hard to get excited because trials and treatment approvals take years”. Even if we achieve an understanding of the abnormal biomedical processes in ME, we still have to work out how they are triggered, how to treat them and then trial possible interventions.

 

[Shadrach Loom]

I’m mildly optimistic that all this blood truffling will eventually result in a biomarker, and deeply pessimistic that it will result in a cure. We have a rough idea of how MS and myasthenia gravis and Parkinsons and Alzheimers all work, without the first clue about how to deliver anything other than symptomatic relief.

 

[Kitty]

Even if we achieve an understanding of the abnormal biomedical processes in ME, we still have to work out how they are triggered, how to treat them and then trial possible interventions.

I’m mildly optimistic that all this blood truffling will eventually result in a biomarker, and deeply pessimistic that it will result in a cure.

Pretty much reflects my feelings too. I suspect that, at least in my lifetime, the discovery of a biomarker reliable enough to gain acceptance might bring more social benefits than medical ones.

The importance of that shouldn't be underestimated, though. Whatever chronic illness a person has, access to suitable housing, aids and adaptations, social support, and enough income for the basics will always make it easier to live with. And to get that, whether it's through social security, employment, insurance, or healthcare routes, they first need to be believed.

 

[JemPD]

We have a rough idea of how MS and myasthenia gravis and Parkinsons and Alzheimers all work, without the first clue about how to deliver anything other than symptomatic relief.

But that would be spectacularly transformative!

My QOL is at least 50% lower because of stigma, prejudice & abuse, of all the health care professions and government agencies that i am reliant upon. Perhaps for those 'mildly' affected it wouldnt make that much difference but just having it proved to be biological in nature would transform my life in a hundred ways, and 'symptomatic relief' would be HUGE!

I couldnt care less about being cured, i just would like to feel safe in the doctors office, safe in a hosptial, treated by society, health professionals & gov't agencies the same way people with MS/Parkinsons are. Wow my QOL would change completely, so lets hope he really is onto something!

Edit:cross posted with Kitty

 

[Shadrach Loom]

Pretty much reflects my feelings too. I suspect that, at least in my lifetime, the discovery of a biomarker reliable enough to gain acceptance might bring more social benefits than medical ones.

The importance of that shouldn't be underestimated, though. Whatever chronic illness a person has, access to suitable housing, aids and adaptations, social support, and enough income for the basics will always make it easier to live with. And to get that, whether it's through social security, employment, insurance, or healthcare routes, they first need to be believed.

Absolutely this, and what @JemPD says above. And, sadly, the importance and need for this illness to be provable is only going to increase in the face of economic, demographic and political headwinds.

 

[Shadrach Loom]

But that would be spectacularly transformative!

My QOL is at least 50% lower because of stigma, prejudice & abuse, of all the health care professions and government agencies that i am reliant upon. Perhaps for those 'mildly' affected it wouldnt make that much difference but just having it proved to be biological in nature would transform my life in a hundred ways, and 'symptomatic relief' would be HUGE!

I couldnt care less about being cured, i just would like to feel safe in the doctors office, safe in a hosptial, treated by society, health professionals & gov't agencies the same way people with MS/Parkinsons are. Wow my QOL would change completely, so lets hope he really is onto something!

Edit:cross posted with Kitty

Completely agree, but just on one minor point: we have symptomatic relief already. Painkillers and staying in bed and stuff. There’s not much more available for the comparable biomarked illnesses.