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.
 
leokitten said:
The flavonoid Dr Levine mentioned was NeuroProtek
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I didn't watch but a quick search says this
Luteolin (> 95% Pure) is a nutrient from a class of naturally occurring molecules known as bioflavonoids. Luteolin was incorporated in this formula after published papers showed it is important in the body as a free radical scavenger.

Quercetin ( > 95% Pure)is a natural non-acidic flavanoid. The quercetin used is NeuroProtek is obtained from the saphora plant. Algonot decisively choose not to use the more common and less expensive source of fava beans.

Rutin (> 95% Pure) is a glycoside of the flavonoid Quercetin. Like quercetin, rutin is extracted from the saphora plant and is a non-acidic natural flavonoid that adds additional anti-oxidant qualities. Rutin helps liberate quercetin in the intestine, making absorption easier. Rutin has been shown to be the strongest antioxidant in studies.
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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.
 
"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/
 
Sisyphus said:
Merged thread

This must have been posted elsewhere, but I didn't see it. The NIH (USA gov't agency which directs most health research in the country) has two days of presentations on the topic, Thursday (tomorrow) and Friday 4/4 and 4/5, to be available via streaming video cast. I'm not aware of any audience participation.

Here's the agenda:
https://custom.cvent.com/536726184E...35e11fdf/572de4fe15dd4c08a515a089094bc343.pdf

Here's the placemark for the videocast, which is scheduled to begin Thurs 4/4, 9am Eastern Daylight Time, which is ummm GMT-4.
https://videocast.nih.gov/summary.asp?live=31636&bhcp=1
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Terrific program and thank you so much for finding schedule/presenters.
 
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.
 
Andy said:
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).
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I am not watching but this reminds me of the nanoneedle signal from the blood by Dr Davis.
 
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