Stanford MECFS working group meeting 2023

Apparently Janet Dafoe will be tweeting starting today.

https://twitter.com/user/status/1698949523425624271

 

https://twitter.com/user/status/1699078589860491416




KDM is there…ugh

 

CAD inhibitors sounds interesting….has this come up before?

 

They must have a lot of lightning talks lined up

 

I've seen his name before, but I'm not familar. I just saw this: https://www.journalismfund.eu/supported-projects/chronically-tired-wallet-professor-de-meirleir Has anyone got an English version of this article?

 

The CAD inhibitor work is part of the itaconate shunt hypothesis.

 

I am reading this article in English


2017-10-04

Research by Apache shows how 'chronic fatigue specialist' Kenny De Meirleir sells his patients, through numerous small companies, often controversially expensive tests and medication that he prescribes himself.

Protea Biopharma, Red Laboratories, Kalida, ProHealth, Nexavir, ... For people suffering from chronic fatigue syndrome (CFS) and seeking help from Professor Kenny De Meirleir, they undoubtedly ring a bell. These are laboratories where De Meirleir's patients, on his prescription, often have extremely expensive but scientifically controversial tests carried out. These tests would indicate whether they suffer from CFS or other similar disorders. But there are also names of companies, whether or not established abroad, where patients buy medication or food supplements on prescription from De Meirleir. Sometimes patients pay thousands of euros per month for this.

Research by Apache shows how all these companies and laboratories have one thing in common: they all point to Kenny De Meirleir. He is the doctor who prescribes the tests, the medication and the supplements to his patients, but at the same time he is also the man who, as an 'entrepreneur', earns a lot of money directly or indirectly through the companies that sell them.

From what I 've heard is that he will treat you with whatever treatment is trending at the time.

 

Thanks, but this page is just a summary of the article. I've just seen that the first link to the full article, on the right hand side of that page, is not paywalled (the second is). I am using a plugin to translate to English.

https://www.apache.be/2017/10/04/de-chronisch-vermoeide-portefeuille-van-professor-de-meirleir

I don't have capacity to read the full piece ATM, but it looks like an investigate journalism deep-dive into KDM.

 

There are many threads about KDM on Reddit and PR. But staying on topic….

The main {good} point of this agenda is that it looks like they are starting ID/screen for candidate drugs.

 

What is this? Google brings up caspases which have to do with controlling inflammation and apoptosis.

 

https://twitter.com/user/status/1699107150390517865


At the Stanford ME/CFS Conference (which is closed) today. I do have to say that it is heartening. People have really specialized and delved more and more deeply into their areas of interest over the years, all of which are yielding intriguing insights. #MECFS23

 

Here is the University of Utah connection.
Looks like they have “something”.

https://batemanhornecenter.org/teaching-scientists-about-brain-fog/

The plan is to get something to try in a small clinical trial as soon as possible, so I arranged with Cindy Bateman, MD for her colleague Brayden Yellman, MD to attend.

 

More specific info….pretty please.

https://twitter.com/user/status/1699457712852242756


https://twitter.com/user/status/1699458864457142368


https://twitter.com/user/status/1699459221178479079

 

This is good news.

https://twitter.com/user/status/1699462364427608457

 

Clearing my throat

https://en.m.wikipedia.org/wiki/Etidronic_acid



https://twitter.com/user/status/1699533263235162364

 

Why???

 

Hannah spilled the beans. This is likely the itaconate shunt inhibitor that was discussed at the meeting. (She attended the meeting via Zoom).

 

When reading the wiki bit on this drug it says not safe for long term use because of decalcification of bones.
How does this fit in for us, in layman’s terms? If anyone knows.

 

https://twitter.com/user/status/1700165715410452537


Hi again thislast amazing day. I started the meeting by sending the scientists greetings from YOU, told them that they give patients hope, sent them that you send them your thanks and ask them to HURRY UP! I thanked @OpenMedF and Vinod Khosla and patients for funding.

 

https://twitter.com/user/status/1700192596616974810


Ron Davis talking about all the reasons he thinks MECFS is curable.