Prusty talks about his upcoming research on a podcast
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Very interesting. We've already discussed C1q (there's some things we didn't discuss for C1q, for example some other findings: https://pubmed.ncbi.nlm.nih.gov/34575280/ or an older Tweet by Prusty "As I mentioned, anti-c1q antibody is produced in response to an EBV peptide through a phenomenon called molecular mimicry. And it has been shown in mice model that anti-C1q Ab alone may not be enough to cause damage but together with other antibodies it can cause extensive damage") and MBL. Either it's one of those or it's one we can't guess since the findings are sufficiently new.
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I've read of many cases though where someone had symptoms that they felt best fit with the description of CFS where they later discovered or decided that they didn't have 'ME/CFS' but something else which ended up being more tangible and treatable, some recovered after investigation of that avenue, the problem remains ' is ME/CFS a specific unique disease, a state the body can go into through many different causes, or just a label vague set of symptoms with some overlap that might actually feel totally different to the person experiencing it '. For example theres many different feelings of 'fatigue' that i've had over time, and many different 'aches' especially if its head related aches, for example mutliple chemical sensitivity and mold sensitivity can cause certain type of headache or sensation, so can dehydration, so can food sensitivity or intolerance / allergy, and so can supplement or vitamin or drug sensitivity.
It could always be that the already existing treatment only indirectly addresses the problem and is very expensive (or even risky like bone marrow transplantation) at the same time and as such the success stories are limited plus the real mechanism behind why it works wasn't understood. The success of the treatment could have been limited because it doesn't adress the problem directly. An example of this would for example be IVIG which has seen some limited success and indirectly addresses the complement pathway.
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BrightCandle
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I have my details back for the conference so I shall be there at 17:10 CET to watch what he presents. I am hopeful something of use will be said but I am a little jaded after 6 years!
Conference sign up form - https://www.medpoint-gmbh.de/me-cfs-conference-2023
Conference sign up form - https://www.medpoint-gmbh.de/me-cfs-conference-2023
Successfully tried makes it sound like Abilify or Rituximab or something like that, I cant think what else apart from odd stuff like specific antibiotics, antivirals, high pressure oxygen chambers, nebulized glutatione or hydrogen peroxide, all those quirky things you hear stories about. If something was tried and consistently worked you'd think it would spread around the patient community.
Without Prusty the conference would be interesting also, with names like Scheibenbogen, Rowe, Hohberger and Stingl
Patients who have been sick for a long time have for the most part tried it all, without having recovered their functionality. I am also worried that no mention is made of PEM, the hallmark symptom. This is not a fatigue illness, yes, fatigue comes along but this is an exertion intolerance illness primarily. And as you say, if something was out there that worked, it would spread like wildfire. This illness is a nightmare to endure.
Rufous McKinney
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not necessarily....
Rituximab, Cyclo, and CAR-T are my guesses. Although the Rituximab trial failed, the anecdotal results that led to the trial are still unexplained. Likewise, the recent potential Lupus cure using CAR-T therapy is pretty interesting and shows that things like Rituximab may not be enough to rid the body of all types of rogue immune cells. These types of treatments would fit in terms of things that are out there, which have produced some interesting anecdotal results, but don't fall within the things that have been trialed in mass by folks doing N1s at home. Anything that can be purchased via the Internet is portably not going to be it as too many folks would have tried it already and reported the results.
Forummember9922
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He says in the interview xyz xyz "Which is why the Rituximab trials did not go (perfectly)"
I know there are plenty of mixed reviews about the two but Is anyone's money on metformin & rapamycin?
IE he will demonstrate impaired autophagy like Avik Roy's recent mtor study? He did say treatment would take time and some improvements from rapamycin happened after months
Guess I’m speaking for the ones I know personally-/ have tried about 90 percent of what is available
BrightCandle
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Something I've noticed is that Prusty seems to be extremely nocturnal and active on Twitter from 3am to 6am (in Germany). Let's hope he's still getting enough sleep.
He's said that we can expect a preprint this month
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Rebecca under the papyrus
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So, to sum up his latest Twitter posts (I hope I disentangled this correctly. He might be a great scientist, but his communcation is terrible.):
He has 2 markers. The first one on thursday will be for a majority of ME in general and LC with neurological symptoms, and correlates with disease severity.
The second one in June will be for LC and severe ME, and that's the missing protein.
Also, the first one might just be a marker, the second one a clear biomarker.
But: A while ago he said the missing protein would correlate with disease severity, too.
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