2024 Stanford MECFS meeting

https://twitter.com/user/status/1831454674744213802


I was going to present this Lightning Talk at the Stanford ME/CFS research meeting tomorrow, but due to a last minute shake-up, I won't be able to. So I'll present it here.
@RenegadeRes
Credit to
@tessfalor
for slide template. 1/n

 

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

 

"This is the first time this data is seeing the light of day - it was created from 27 people w/ ME/CFS/Long COVID who have been tracking their symptoms, medications, sleep, mood, and more, every day, for months. 8000 days and 3113 unique symptoms over 27 people. I went through the data looking at symptom occurrences: do two symptoms appear on the same day more than you'd expect by chance, or less than you'd expect by chance? Then I took the matrix and cluster it using something called the Multiresolution Consensus Clustering algorithm, finding collections of symptoms that all co-occur together more than you would naively expect (that's the black line). We hypothesize that these clusters of co-occuring symptoms reflect different underlying systemic pathologies - the "ground truth" that we can't get at (yet). The matrix you're looking at was constructed from an aggregate of all 27 volunteers - but given enough subject-level data, we can also make individuals portraits, which we hope will help people learn patterns in their own disease to better target personalized interventions."



I think he's basically saying that maybe these clusters of symptoms (black boxes) represent some kinds of separate pathologies in ME/CFS or Long COVID because they occur on the same day more often than other combinations. One example looks like jaw pain, constipation, migraine pain, headache, dizziness. The blue areas are the opposite. They are the least likely to occur on the same day.

 

Ok thanks. I disagree with “collections of symptoms…Co-occur more than you would naïvely expect” the Co-occurring symptoms are exactly what I’d expect, I’m not sure why this is of note.

 

Yes, most of them seem pretty obvious. There are some interesting ones, like hives co-occurring with night sweats and insomnia or joint pain co-occurring with tinnitus.

 

Night sweats cause sweat which causes prickly heat, I wouldn’t find that so odd. It’s interesting data but also it’s very lacking in detail. I’d want to know date/time/menstruation/gender alongside it for a start.

 

https://twitter.com/user/status/1831761901526905067


Rob Phair 2 patients who improved greatly from Jak stat1 inhibitors.

 

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."

 

What did they take???

 

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."

 

I don't think she has publicly announced that yet.

 

We have a thread on the Bornfree protocol here

 

https://twitter.com/user/status/1832152183934222676

 

I think they took the antibiotic?

 

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"

https://www.youtube.com/watch?v=QzM38jppvZ4

 

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.

 

He doesn’t spill any beans.

 

https://www.healthrising.org/blog/2024/09/09/ron-davis_working-group-2024-meeting/

Of Firehoses and Hope: An ME/CFS Advocate’s View of Ron Davis’s 2024 Working Group Meeting

 

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!