CFS Research Center at Stanford Second Annual Community Symposium Sept. 29-2018

If you enjoyed the Symposium (especially those who watched from home, or are awaiting for the replay on YouTube), consider making a donation to support the work of all these fine people. They are making progress and more are joining their effort, but the work is still slow due to the lack of funding. Every dollar will be put to good use.

 

An absolutely valid thought, nothing wrong with it, but my way of thinking is that we want as broad a range of researchers funded as possible, the OMF recently had the large cryptocurrency donation of several millions and also has support from many patients, so I look elsewhere when deciding who to donate too.

Just my way of thinking, and obviously the important thing to do is to donate, no matter who it's too.

 

i respect what you say, and indeed it’s good to have independant researchers, but research collaboratives have great advantages too.

i am all for research, and will take whatever results that will make a dramatic improvement in patients’ lives. While we are pressing our governments for more funding, it won’t hurt to support our researchers, wherever you want your money to go to.

I was just saying we had a full day of presentations and there is a good way to say thank you.

 

I think Ron suggested that we may have fewer viruses because our immune systems are up regulated. Please correct me if I got that wrong.

I watched Dr Phair and Ron afterall, and learnt a bit about the nature of science which felt exciting.

Don’t ask me to repeat it. I didn’t understand Dr Phair’s graphs but the explanations made sense at the time. There was inhibition of IDO1 ( I think) which led to fatigue.

My best recollection is -I remember Ron saying scientists can’t “cherrypick” from their data and something about they now had stuff to observe and could formulate hypotheses. As I understood it, Dr Phair has a hypothesis ( the metabolic trap) which needs testing. If that hypothesis is wrong then there will be other hypotheses to test. They need money for this. And Ron said humorously that most of science is disappointing.

Can someone with more knowledge than me help out? It felt exciting. I wish I had seen Younger. Will look out for write ups.

 

Am not a scientist but feel that Dr Davis and collaborators seem to have assembled what looks like a very impressive team.

 

I expect that the scientists among themselves in all their meetings and conversations probably discussed and maybe answered some of our question. Maybe it is obvious, but the amount they were able to convey in the time allotted to patient presentations is not everything that they hashed out among themselves at every other opportunity.

On the patient day, I noticed how the scientists nicely responded and conversed with patients when queried, but at other moments could be seen eagerly continuing their questions and discussions with each other.

 

Is there anyway to rewatch the video for those of us that missed it?

 

Is there a general feeling that we are getting closer to answers?

 

Hi,

I missed the symposium--I guessed that there was nothing definitive on Cyclophosphamide from Fluge? I see from Cort Johnson's tweets that he infers that there are some positive results.....

Thanks

 

Good to see this attracting such a lot of interest:

https://twitter.com/user/status/1046806956445335554

 

More than 5000 people participated??? That photo doesn't do the numbers justice then.

Was there any breakdown on publications in progress from the OMF does anybody know?

 

At one point I thought Linda Tannenbaum said there were over 3,000 people watching the livestreaming - I guess it went up...

I was listening for people mentioning publications but didn't catch anything.

 

This is an 8 hour livestream of Saturday’s symposium at Stanford. The plan is for the separate lectures to be divided and put on the OMF website ASAP but this is available in the meantime.

Somewhere earlier in this thread was the day’s schedule-order of speakers. Sorry, I don’t have the energy to find it currently ( can’t sleep - brain buzzing) but if you access it, you can make an educated guess on where to find the speaker you are interested in.

Dr Fluge was the keynote speaker at about 35-40 mins in. Earlier stuff is welcomes etc. Fluge was restricted in what he could say because papers have been submitted but still fascinating.

I was able to access straight in but I was signed in for Saturday. I think you may need to sign in otherwise. There will be no sign in when on the OMF site.

Phair towards the end of the day was particularly interesting. Do NOT try to undo the metabolic trap individually by experimentation. It is highly dangerous.

Now brain dead and will try sleep again!

 

Here's the agenda: https://www.s4me.info/threads/cfs-r...ymposium-sept-29-2018.3255/page-3#post-108186

Here's the livestream, @Jonathan Edwards: https://www.s4me.info/threads/cfs-r...ymposium-sept-29-2018.3255/page-7#post-108899

 

@Sasha. Thanks for finding Saturday’s agenda. It was beyond me last night.

 

Not working for me either! I've deleted the post.

I dunno..perhaps the shrimps carrying the that bit of the internet across the Atlantic have been eaten by a flotilla of jelly fish or something. Or maybe I did it wrong.

 

Here are some comments after looking at the whole symposium given the results from the analytical techniques i've been using :

cc : @JaimeS

ALAIN MOREAU :

approx @ 2:46:21 He talks about TSP-1 (aka THBS1) being upregulated.

Here is slide 47 from my presentation, you can see where TSP-1 is located :





Unfortunately i do not have the knowledge to comment but perhaps TSP-1 is upregulated for a reason (he talks about inhibiting it so that ME/CFS Symptoms are ameliorated).


MICHAEL SAKORA

@5:22:53 He shows a heatmap of Genes with clonally expanded cells (i am not sure if i got this right). In the figure below i annotated two Genes, namely FASLG (FAS Ligand) and MYO6 :






Twitter , August 2017 :



The system got FASLG and a near hit (?) for MYO6 -got instead MYO9B- but both MYO6 and MYO9B are relevant to actin binding and actin filaments.

See also the relevant post here (August 2017) :


http://algogenomics.blogspot.com/2017/08/new-findings-myosin-d3-actins.html


JARRED YOUNGER

@5:40:12 He talks about elevated Lactate. Machine Learning confirms the relevance of this finding to ME/CFS :


Slide 25, Machine Learning ranks lactate on the top 5 positions :

 

From freelance journalist Miriam Tucker, who has written some great articles about ME for Medscape. Perhaps she'll do a writeup now afterwards?
https://twitter.com/user/status/1047367146857222151