NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

There was this interesting bit about the intramural study with Brian Wallit. He reported only 3 out of 22 ME/CFS being excluded because they found another, rare disorder. One patient had rare cancer, one atypical myositis, and one parkinsonism.

But then he showed that the healthy controls had a similar amount of exclusions. People weren't as healthy as they thought they were. Unfortunately, I don't have the slide but I think they found things like early cancer and signs of Alzheimer.

So if these figures are correct, then the report of many ME/CFS patients who turn out to have a rare disorder should be taken with a grain of salt. Instead of ME/CFS being a label for many undiagnosed rare disorders, these figures suggest the NIH researchers are simply really good at finding health problems - they even find them in patients who think they are healthy!

Also: the short illness duration (max 5 years) might increase the chance of finding an illness other than ME/CFS. Wallit mentioned that the patient with rare cancer has passed away. So these figures might not apply to patients with longer illness duration.

 

I didn't watch but a quick search says this

Luteolin is found in many foods.
Quercetin is also found in many vegetables. Its absorption is poor but EMIQ is a form which has a very high absorption rate. I tried a tablet, had no effect on me, i actually have a dozen tablets kicking around, long story, perhaps taking it for a couple weeks will do something noticeable?
Rutin if its only helping absorption of Quercetin then i would go with EMIQ. If its absorbed itself and does something then thats interesting though its also found in many foods including vegetables.

 

Crocodile tears

 

"Dr. Collins: Transcript of Remarks on April 5, 2019
by Jennie Spotila

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments.

Thank you, Walter. I’m really glad to be able to be here for at least a few minutes to address this distinguished group at what I think is a real milestone in our efforts to understand the cause and ultimately define preventions and cures for ME/CFS. I hope you have heard in that brief introduction from Walter, but I’ll tell you myself, how deeply committed I am to trying to find answers in this circumstance. ....."
http://occupyme.net/2019/04/05/dr-collins-transcript-of-remarks-on-april-5-2019/

 

ME/CFS patients differences in butyrate (not sure I'm posting this slide correctly, so I'm hoping interested folks can see it.)

 

Terrific program and thank you so much for finding schedule/presenters.

 

Might have to go back to uni for what, 10 years?

 

I wonder why Walitt excluded the post Lyme control group data when comparing results.

 

.
Is that David or the presenter?

 

I'm sorry, I meant my going back to uni for probably 20 years.

 

Interesting that both Natelson and Schutzer were in the audience and asking questions. Natelson, I get why he'd be there. Schutzer, not so much.

 

Remind me, who is Schutzer?

 

Fascinating talk right now about mitochondria fusion/fission activity.

 

Bhupesh Prusty, https://solvecfs.org/dr-bhupesh-prusty/, presenting right now, seems to have evidence for the "something in the blood" concept but he doesn't know, yet, what it is. A UK researcher has also told me that he believes that he has found evidence for that as well (that is as much as I know at the moment).

 

Interesting. Prusti is reporting reversible serum-induced mitochondrial alterations - sounds similar to what Ron Davis has reported.

EDIT: Seems like @Dancer and @Andy were thinking the same thing.

 

Interesting, it might have been nice to see more than the odd minute at a time tho - kept cutting out.

So who's up for twice hourly dialysis?

 

Ron Davis up next!

 

I am not watching but this reminds me of the nanoneedle signal from the blood by Dr Davis.

 

Steven Schutzer was one of the Lyme contingent of the collaborative effort involving Natelson (ME/CFS) and Fallon(Lyme) and Coyle(Lyme) that resulted in this study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044169/

 

Thread by ME Action (Jamie S) on Prusty's talk:
https://twitter.com/user/status/1114219970660052992