2024 Stanford MECFS meeting

Interesting, I use bearable a few years ago. I liked it but then Visible came along.
In simple terms, what is this data showing? I am hard of understanding data
 
https://twitter.com/user/status/1831918836976906436


Katrin Boniface:

"At the end of this talk today for #MECFS24, I finally stated publicly: it’s been three months and I do now consider this to be remission."

"Remission is not symptom free. I’m still hupovolemic. I still have memory issues, which are likely due to mycotoxins, lead, mercury, or all of the above. But they might also be side effects of treatment"

"Being able to hike a bit (in the shade, early or late in the day, minimal grade, and only about 20min at a time when we went last month) has been amazing. Everything else has been “practical.” Yes, I can take care of myself and the house and that’s great. This was magic."

"I know everyone is anxious to know how I did it. All three protocols had enormous overlaps in mechanism, even though they used different compounds. I feel confident I can replicate this…for myself. Right now we’re at n=7

2 minor miracles
2 good responses
3 zilch

Not great."

"I do feel better that so far I’m the only one of the seven that have had severe adverse events. For me, that was more than worth it!

I want more clarity before going fully public, but with 6 safe responses I can offer to chat more individually with folks who will be cautious."

upload_2024-9-6_19-35-51.jpeg
 
Tweeter 1: "Some of us will have some of these labs done already, the amino acids specifically are relatively (relatively!) easy to get, so would love to know are the high or low in serum etc"

Katrin: "Right now inverted glutamate:glutamine is the most common and reliable; aspartate is more complicated due to a higher variation between acute (ultra low aspartate) and chronic (high). Serum, urinary, and MRI measures are roughly correlated when looking at ratio, less for single."

Tweeter 1: "Sorry, when you say inverted, am I correct in that serum glutamine should be higher than glutamate, so the invert is low glutamine? Or at least higher glutamate: glutamine ratio? I could have that muddled!"

Katrin: "Yes"

---

Tweeter 2: "So with this I wonder how it all fits into the born free protocol? I am planning to do it soon."

Katrin: "Fits very well! Can think of this as zoomed in on glial glutamate metabolism (including signaling as well as substrate). And removing roadblocks is important- including what you’ve been working on with metals and what BornFree lays out for supporting surrounding pathways."

---

Tweeter 3: "Is there anywhere we can watch the talk?"

Katrin: "We’re planning to give ours publicly some point in the next few weeks."
 
Jarred Younger: 033 - Updates from the 2024 Stanford ME/CFS Working Group

"The annual Stanford ME/CFS Working Group meeting concluded last week. In this meeting, researchers were able to share their preliminary results before public release. In this video, I give my observations on the state of the science. - Jarred Younger"
 
It's even more clear to him that there are probably ME/CFS subgroups through his observation with working groups. Lab tests showing different really interesting things in different pathologies.

I've observed this over 20 years ago.
 
What was in common between Younger's video above and Cort's write-up is emphasis on the increased volume of research now (and increased number of researchers) and the collaborative approach.

Younger says some good basic research will come out soon. I suspect his mention of subgroups is a way of saying that this research is not very consistent across research groups!
 
Murph said:
Younger says some good basic research will come out soon. I suspect his mention of subgroups is a way of saying that this research is not very consistent across research groups!
Click to expand...
Hmm. My immediate response to reading this was that it's a problem if the subgroup you belong to is determined by which research group analysed your sample! I guess that's not what he meant.
 
Trish said:
Hmm. My immediate response to reading this was that it's a problem if the subgroup you belong to is determined by which research group analysed your sample! I guess that's not what he meant.
Click to expand...

Quotes from the video about subgroups:
"It's really even more clear to me that there are probably ME/CFS subgroups. I think I see these different laboratories showing different really interesting things and in different pathologies, and it just makes me think that they are identifying different ME/CFS subgroups with different things wrong with them that are probably going to need different treatments."

"We need to figure out I think what are the critical subgroups because again I think they're going to need different treatments and I think a lot of studies, particularly clinical trials, ignored the subgroups and I think that's always been a problem."

"If you run a clinical trial, if you're testing a treatment and you just give it to all the people who meet ME/CFS criteria, that clinical trial has a really good chance of failing if there are actually subgroups."

"If there's actually subgroups and maybe only 25% of the ME/CFS participants are in that subgroup and only 25% would therefore respond to this treatment, that treatment may be great for the 25% but the clinical trial will still fail and the treatment will be rejected."

"We really have to work on identifying those subgroups in advance so we only give the drugs to the people who are most likely to respond to it."
Click to expand...
 
Different findings in different laboratories only suggest subgroups if those findings are incompatible with each other in terms of mechanism. I am not sure I have seen any such incompatibility. And the most likely reason for different labs finding different things that are incompatible is that none of the findings are solid.

Suggesting subgroups is a popular way to explain away inconsistencies. There may well be subgroups but unless Younger can say something more specific this looks like wishful thinking to me.
 
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