Prusty talks about his upcoming research on a podcast
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Jackb23
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Could this be a huge deal if ebv is driving a lot of the disease? Explain like I’m 5 if you don’t mind.
Well as you said the first question and the most important question is if EBV is driving or contributing to MS (and ME/CFS). The EBV and MS connection, just as for ME/CFS, has been speculated to exist for decades and it’s shameful that proper research in this direction only started happening in recent years, especially as MS doesn’t lack research funding. However, we still have no idea how this connection works exactly. Medical trials can help us figure this out, even though it’s more often than not equivalent to throwing darts at a board with your eyes closed, unfortunately that is the norm in medical and pharmaceutical research. The research that Atara Bio does certainly is a bit more targeted than the usual “let’s just use stem cells or T cells and see what happens” kind of research which is the norm. A person with more MS knowledge would definitely know the details much better than me.
What this means for ME/CFS and EBV’s involvement in it remains to be seen. MS and ME/CFS have long since been described as sibling diseases, possibly even with the same cause where the progression then branches into two distinct diseases. Whether that will be true in the end we’ll have to wait and see. But from all diseases that exist (Long-Covid or other post-viral illnesses aside) ME/CFS research will, somewhere down the line, probably profit the most from targeted EBV research in MS (even if it would just be targeted EBV approaches to rule it out).
ELI5: If we were to quickly figure out how EBV causes MS, I'm relatively confident we'd learn an immense amount from that for ME/CFS, even if it's just about how to characterise or detect EBV tissue reactivations to rule them out. If things were to take extremely long it might mean things are a lot more complex and some problems are too hard to be solved.
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Jackb23
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Yea my ME/CFS developed from EBV so this piques my interest. Hopefully the side effects are too profound as antivirals are a no-go for me.
Would this therapy wipe out EBV or just change the response someone has to the virus?
The targets can be different as I understand and often require quite specific T-cells for the elimination of EBV infected cells associated with MS or eliminating transformed B-cells. There's probably other mechanisms as well, but in general it seems to be a modulation of the immune response to suppress EBV, rather than an outright eradication of EBV in the whole body, which seems close to impossible.
This is a good paper on the methodologies: https://onlinelibrary.wiley.com/doi/full/10.1002/cti2.1444.
I haven't read it myself yet and my knowledge on MS is very limited, but aparently some patients are reporting that the ATA188 trials for MS aren't going too badly, but it's still too early to say. The progressive MS community is putting quite a bit of hope into this drug and apparently the Phase 3 study would start this year if Phase 2 is succesful, so the progress is very swift.
Atara Bio is not the only company working along these lines. Another example would be Tevogen Bio, who've also shown interest in Long-Covid. Hope Biosciences seems to be taking a far less sophisticated approach, but are already running a Long-Covid clinical trial. There's probably others as well.
Jackb23
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I’m going to email the authors to see if they’ve thought about using it for me/cfs.
That's awesome! Anybody reaching out to pharmaceutical companies and researchers to make them aware of ME/CFS is great, even though most of the time nothing will come from it.
Regarding that I shoukd mention that Atara Bio's stock price has gone down by 50% in the past 3 months and their cash reserves are only very small. Let's hope this isn't the last we see of this drug.
Forummember9922
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Agenda for international ME conference June 2. Davis, Phair, Prusty and many other genius soldiers
BrightCandle
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Still nothing on what Ron Davis will be speaking about, not sure whether to be concerned or excited about that.
I think people read too much into it. Speakers go to conferences to discuss recent work, either ongoing or recently published work. Lutz Schomburg's talk title is also tbc, but if I'd have to take a guess it would probably be about the recently published selenium problems associted with ME/CFS and thyroid problems. For Davis my guess is he would have talked about the itaconate shunt hypothesis, but since Phair is already doing that, he'll speak about some other recent work. In the majority of cases researchers (excluding some cases of PhD students) don't attend conferences (especially if they are going all the way from the US to Europe) without presenting some work since that would be silly and a waste of resources. It's sort of a prerequisite if your advanced researcher to present your work if you attend a conference.
Could you post a link to Schomburg's paper?
Here's the paper: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4332223.
He also recently did some work on abs to adrenergic/muscarinic receptors, but it was not related to ME/CFS or Covid. So him presenting something along the lines of this work seems like a safe bet.
Dude
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I'm sorry if this has already been asked, but there isn't a live stream, is there? If not, will the videos be uploaded afterwards? Is there maybe even someone live on site and can report?
BrightCandle
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As far as I know no and no. Its in person only paid for conference (ironic given its Investinme and thus excludes most ME patients from attending) and they have no said there is any recordings or availability afterwards.
Jackb23
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Do we think that there may be information in these presentation that may be speculative about treatments that may or may not be risky?
Forummember9922
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Jeez that would be such a bummer I wouldn't have even shared the flyer in that case! Crossing fingers.
junkcrap50
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I think there will be videos of the conference, at least eventually. But I don't know how soon after the conference they will be up. Scroll down to the bottom and see "Past Conferences" https://investinme.org/IIMEC15.shtml and they say they have videos of past conferences (https://investinme.org/iimec-conferences.shtml): "We have videos from all presentations in all conferences available. These are not just educational but contain a historical record of research progress over the years." They host colloquiums (different from conferences) which are closed doors and for researchers only.
Taken with a camera from the time when Prusty made his inital announcement (just a little banter, I know writing a preprint takes a lot of time)