halcyon
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Why is enterovirus serology not being done in the severely ill big data study?Any questions please ask away
Why is enterovirus serology not being done in the severely ill big data study?Any questions please ask away
Thanks so much Ben--this is great.
I have a couple of comments:
If we simply edit the post with our questions, how would anyone know? It won't pop back to the top of new posts, and, if I understand correctly, it won't trigger a watched thread alert. This is likely to be a long thread and members won't be able to keep going back and looking for edited posts.
Jarred Younger isn't a clinician--he doesn't see patients. I think he is looking for a clinician to liaise with but, as far as I know, it hasn't happened yet. He does have research projects that patients can participate in though.
Why is enterovirus serology not being done in the severely ill big data study?
I'm aware of that, I'm specifically asking about serology. They are performing full serology for herpes viruses, parvovirus B19, and borrelia but they are ignoring enteroviruses for some reason.As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).
I'm aware of that, I'm specifically asking about serology. They are performing full serology for herpes viruses, parvovirus B19, and borrelia but they are ignoring enteroviruses for some reason.
Hi Sushi.
Im keeping an eye on each post and question asked, noted down. I will periodically check each persons posts to see if any more have been added. I thought this way we would have less clutter/random impulse questions, less (undirected) posts overall. I am open to suggestions though-as a moderator you might know best!
R.e Jared Younger-thats simply the list I have from OMF. I will clarify with Linda.
B
@BenHowell Sorry, that was a mistake. Ben, could you switch Jarred younger up under academic collaborators part of the list? Thank youThanks so much Ben--this is great.
I have a couple of comments:
If we simply edit the post with our questions, how would anyone know? It won't pop back to the top of new posts, and, if I understand correctly, it won't trigger a watched thread alert. This is likely to be a long thread and members won't be able to keep going back and looking for edited posts.
Jarred Younger isn't a clinician--he doesn't see patients. I think he is looking for a clinician to liaise with but, as far as I know, it hasn't happened yet. He does have research projects that patients can participate in though.
Much later, I contacted Dr Chia and he requested slides of the biopsies and confirmed enterovirus. He even suggested that the virus was causing inflammation in the veins and thus aneurysms. Yes, please ask about enterovirus. Thanks for your superb work.Good question @halcyon . Noted down. As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).
Thanks!
Ben
From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future.Why is enterovirus serology not being done in the severely ill big data study?
Two Rs in "Jarred", BTW (for their list).
@BenHowell Sorry, that was a mistake. Ben, could you switch Jarred younger up under academic collaborators part of the list? Thank you
From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future."
This just amazes me about the whole project - they're designing all this incredible stuff!
If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?
Where the heck is the NIH in all this? (Don't bother answering that one! )
"If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?"This just amazes me about the whole project - they're designing all this incredible stuff!
If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?
Where the heck is the NIH in all this? (Don't bother answering that one! )
From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future."
The OMF data so far suggests problems with energy production in cells (in a highly selected sample). The Rituximab results suggest B cell related autoimmunity in at least half of patients (in a sample meeting the Candadian case definition, recruited through, I believe, referrals from neurologists).
According to the Norwegians, the more severely ill patients seem to be less likely to respond to Rituximab.
Maybe this is a variation of the story of the blind men and the elephant, maybe we're starting to see subgroups emerge more clearly.
My questions to the OMF:
How are you approaching the subgroup issue?
Do you think that the Rituximab response group has the same disease as the patients that you have looked at so far?