I've been IgM deficient for at least a couple decades. Instead of going to the newer LC group for that 3 year window which would add to the research time, why don't they ask pwME who have been tested already?
In my head I'm already thinking of a scenario how I can convince my family doctor that he will administer it to me
Joking aside, are there any risks in administering Ivigm to a "healthy" (mecfs sick) person? The price is quite okay at 500 €.There's the usual risk, which always exists with ME/CFS: The extertion to get the treatment does damage to your body, whilst the treatment does nothing.In my head I'm already thinking of a scenario how I can convince my family doctor that he will administer it to me
It's not just that though. He seemingly suddenly went from a small sample size, to a massive one (over a hundred ME/CFS patients, a similar amount of HC, and over a hundred longhaulers). The data in Berlin was not convincing. In his interview he was very convinced, however it was relatively different to his last interview (no focus on Herpesviruses and especially not mitochondria).
That was my thought, can we 'boost' the B cells ? but he made it sound like the problem viral infection / re-activation there was a one shot sort of affair, not necessarily an ongoing disruption, sounds like that was an aspect he wants to research in future. I listened to the podcast carefully and he said that some people recover their immunoglobulin levels which is why you heard stories about post viral fatigue and ME/CFS only lasting one year. I suspect we are in more trouble because our levels didn't normalize and we went on to develop further problems, in which case restoring those levels might not solve our issue ( but he did seem to say that fibronectin levels are responsible for engaging the CDR / inflammation, and constitute part of that 'something in the blood' that fragments mitochondria downstream. Is our issue CDR / mito / inflammation or autoimmunity ? or complex activation problem ? how does the excessive immune response to a broad range of antigens factor in ? I don't fully understand.
There was a small study for acute Covid where those patients that received Pentaglobin+normal treatment were actually slighlty worse off then those that only received the normal treatment https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8270756/.
From the internet: Generally, IVIG infusion can cause migrainelike headaches, nausea, and dizziness. Infusion reactions including severe allergic reactions have been reported especially in patients with IgA deficiency. It may also promote thrombosis and may result in thromboembolic venous or arterial events. Other adverse effects include acute renal failure, aseptic meningitis, hemolysis, transfusion-related acute lung injury, and transmission of blood-borne infections (it's collected from human donors).
Well, several studies of immunoadsorption have been done in ME/CFS patients. Mostly positive results to me/cfs symptoms. Didn't report any adverse effects that I can recall. Other studies of immunoabsorption has measured IgG levels before and after it, and while it decreases IgG it doesn't entirely eliminate it. Sometimes IVIG is given after immunoadsorption (in some studies), other times it's not. I've heard some times it's recommended to limit human contact for 2 weeks afterwards, but that could be just a precaution.
Why is it strange he didn't submit it to Arvix? The traditional route is zero discussion, talk, or release of any info regarding research; write paper; submit paper to peer review; if passes peer review, then submit for publishing; wait until it is published. It appears to me that submitting preprints is a more (and very) modern thing now. If nowadays submission to preprint is done, then that's usually after it's submitted to peer review (either before or after it passes peer review).
That is not the traditional route. It sometimes depends on the science. In mathematics, physics and other sciences you even submit a preprint to the Arvix even before you submit the paper for peer review. In those sciences virtually every paper is submit to the Arvix before publication. There's several advantages to this. All the world class scientists in these fields do it. If you don't it would even be frowned upon. It also very common to talk about things that aren't even close to being published, just not in interviews to the public, but in seminars, conferences and workshops.
Yes, you are correct: in mathematics, physics, computer science. But this is not true for medicine or biological sciences. Medrxiv didn't start until June 2019, and Biorxiv earlier in 2013, but had slow growth until 2017.
