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The EUA is for use as a vaccine alternative in a narrow set of health conditions. Essentially, those who are unlikely to make their own antibodies or those for whom response to an antigen may be dangerous. It’s also being used off label for long covid. Anecdotally, for those with LC without...

As someone with long covid, it’s really difficult to understand what purpose the vaccine serves at this point for most people. It’s terrible at preventing infection and transmission. It doesn’t seem to prevent long covid (it didn’t for me!) and it seems to mostly worsen long covid. Long vax...

I think Butyrate also came up is some of OMF/Ron Davis’ work when they were working on the metabolic trap hypothesis. It may be in a video as opposed to in something that got published. I’ll see if I can find it.

I can’t speak to ME/CFS, but as for Long Covid, my anecdotal experience is that wasting unrelated to caloric intake absolutely occurs and does so rather dramatically. I’ve had LC for two years. Within the first 6 months, I lost 25% (50 lbs) of my body weight. I looked much like a late stage...

Copyright probably applies to posting photos of full slides, but it should have no impact over summarizing the information presented in X posts. Keystone needs to pick a lane. If the information is confidential, don’t try to profit by offering admission to the general public for a fee. Once they...

For what it’s worth, I have some positive first hand experience with LC and mAbs. I’ve had relatively severe long covid (essentially home bound) without PEM for two years. My symptoms are primarily heavy neurological and cardio/circulatory. I had a Pemgarda infusion in mid-June ago. I’m not...

This is insane. If I understand correctly, they charge a hefty fee to attend, allow anyone who will pay their toll to attend, and then they censor public discussion of the information presented. Unless they have some sort of NDA in their licensing agreement for attendees, I can’t see any...

Given the association between responders and decreased IgG4 following Dara, could it be possible that depleting IgG4 is actually the key? Perhaps something along the lines of: (i) IgG4 blocking a signal necessary for resolution of immune activation; or (ii) IgG4 preventing antigen clearance by...

With great determination, effort, and expense! In all seriousness, there are a handful of doctors who treat LC that are willing to prescribe it. Insurance is probably trickier to navigate, but I paid cash and skipped that hurdle. It’s around 7k if you shop around.

For what’s its worth, I’ve had long covid for 2 years beginning a week after my first covid infection resolved. My symptoms are primarily neurological (relatively severe) and cardio/circulatory. I’ve been essentially house bound with periods of being bed bound. I don’t have PEM or crushing...

Assuming for the sake of argument that anyone has ever benefited from this type surgery, I’ve often wondered if the physical trauma from the surgery might be the cause of any improvement as opposed to the relieving of alleged brainstem compression. Kind of like a souped up version of feeling...

Fluge/Mella for a Dara phase 3. Anyone who wants to test Jonathan’s hypothesis. Davis/Phair’s Itaconate shunt. JAK inhibitor trials.

Has this group done anything to move the needle in ME/CFS? It seems to me that these fund might be better allocated elsewhere.

Ah, sorry. I missed that context. I very much agree with the above. I think there are at least two reasons nebulous concepts like POTS are thrown around so frequently. The first happens at the researcher level, which you have illustrated well for us many times. The problem as I understand it...

While I agree that POTS may be a fuzzy concept, my personal experience is that extreme changes in heart rate and orthostatic intolerance are absolutely post viral for me. I’ve experience multi-year ME/CFS like post viral illnesses three times in my life (ages 18/37/44). All began within a few...

If I’ve understood the hypothesis correctly, PEM would be a downstream side effect of cellular debris triggering immune activation as opposed to a protective mechanism of some kind as many others have speculated. If that’s the case, would this hypothesis potentially allow for ME/CFS without PEM?

Looking forward to reading this and greatly appreciate all of your efforts to solve this awful puzzle of a disease.

Thanks for taking a look. All of this is well beyond my understanding. For what it’s worth, I put the PK tables into AI. After adjusting to 1,200mg v. 4,500mg doses, AI says Pemgarda is roughly double the dose, but has a shorter half life. So, Pemgarda starts off at double, but they are roughly...

Thanks. Here is what I found on PK data. Does this tell us anything?

After doing a bit of digging into the AER-002 trial documents, there are reasons to believe the trial design, as opposed to mAbs generally, may be the problem. Here is what I found: 1. ⁠The AER-002 trial used a 1,200 mg dosage, which is about 1/4 of the Pemgarda dose, and then looked at...