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Reply from the NIH

L

lenora

Senior Member
Messages
4,926
Unless the Community makes itself available for these studies, exactly what do we expect to get? It is not fair to blame researchers or doctors if they don't have available test subjects. It just doesn't make sense.

I was a test subject for pain relief for patients with CFS/FM.....really, there was nothing until we came up with gabapentin (which now has family members). Fentanyl was a bust (if you're honest, most will agree with that....it just didn't work on nerve pain) and all of the old standbys were the same. It took 3 mos. of my life to stabilize on gaba, but look at the number of people I helped along the way. I wasn't the only one of course and yes, it wasn't easy for me or my entire family.

What Brian and others are doing is extraordinary. He'll feel that he gave something important his entire life long.

We had a terrible time getting test subjects for that fairly easy (in comparison to yours) study. Why??? Other groups manage to do it, why can't we?

My doctor at the time (now deceased) did a wonderful job, and we were even scheduled to appear on TV. Unfortunately Afghanistan broke the same day and never really went away.

I'm sure there are still studies that can't be done, and not all are as involved as Brian's. Make yourself available....these things don't last forever, but they are necessary. Mine was local, so I was fortunate and we still had negative reactions. Sorry, but I don't think there was a time when "perfect" ever existed.

I'm old now (76), so I truly can't enter studies at this point. Still, one day all of you will be my age and unless younger people partake, we'll be facing old age not knowing what is going to happen. If I'm anything to go by, I can tell you that everything is affected....and I'm still having things like spinal taps (much easier now than they used to be). I know my new neurologist doesn't believe in ME (what happened to FM?), and she was at least honest. Did I like it....no; did I blame her.....no. I'd have to get to know her and also present my side of the story. This takes time.

Unless we can get to the root cause we're going to be stuck in "nowheresville" even 50 years from now. Yours, Lenora
 
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Dakota15

Dakota15

Senior Member
Messages
320
Location
Midwest, USA
From Nath: "everything cannot go into a single manuscript. So, there will be several other manuscripts that are going to come out. Each one of them is going to take a piece of it and then describe it in more detail. So, second manuscript on muscle alone has already gone out and is under review, and then they'll be one on microbiome and so on. There will be a whole host of manuscripts coming out as soon as the first one gets accepted for publication."

"We're also keying on, trying to see, based on these observations, if we should try to conduct some pilot clinical trials here at NIH, so those things are currently in process of discussion."

"We've done a lot of work on Long COVID over these last three years...submitted several manuscripts that have already been published...we have a clinical trial for Long COVID using IVIG and are currently recruiting patients for that study."
 
BrightCandle

BrightCandle

Senior Member
Messages
1,155
I saw some of this today, one of the things he talked about today was that autophagy is not working because ATG13 is attached to phosphereus and is instead driving brain inflammation. Certainly we have talked about the odd Mtor and ATG13 findings before where these were elevated but appearing not to work, this takes an extra step on that path.

I am not sure its all that helpful however, it would explain why exercise and especially resistance exercise causes problems as it boosts mtor and hence will boost ATG13 which in this form will gum up the brain. But I have no idea how to get the body out of resource starvation mode into abundence so it can properly break down the cells that presumably are infected and need cleaning up. More digging in this area is required before a potential for treatment falls out unless this jogs something in someone elses brain about how we might cause that to switch.

We possibly need to research into what the ATG13 gene requires in order to do its work as catalysts/cofactors/resources and link it together with what we know is missing in our bodies. I am wondering if this links with Prusty and if its all pointing at the same protein. More to think about as to what this one suggests I think.
 
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