, 21 tweets, 11 min read Read on Twitter
The NIH call right now: a THREAD (1/LOTS) #mecfsatnih19 (Because a lot of it is about the conference!) #pwME #MillionsMissing
Avi Nath: updating on intramural program. Nath had a family emergency, which was why Wallitt stood on at the conference. "We've made tremendous progress, we are now at the midpoint of recruitment" and it's time for interim analysis. (2) #mecfsatnih19 #pwME
Did "exhaustive" testing so time to assess & judge if it's time to "retool". A lot of pts have the dx of #MyalgicE but they discovered other dx. Maybe #MEcfs could be a "compendium" of multiple diseases. (Keeping in mind that #pwME in this study met CC, Fukuda.) (3) #mecfsatnih19
Close to 1K participants including online, 30 sci presentations. It was "especially gratifying" to see some presentations from folks who were new to ME/CFS, along w/one of the world's most honored geneticists and one of the world's most honored immunologists. (4) #mecfsatnih19
Komaroff now: Two things were especially impressed on him: how far we've come in the past 30 years, and how far we still have to go. 30 yrs ago we had no reliable objective evidence, just symptoms. But now that has changed. (5) #mecfsatnih19
Some presentations confirmed/extended previous findings. There are various abnormalities "involving the brain, and ANS, metabolism... and the immune system, which appears to be engaged in a chronic battle... whether genes are turned on or off appropriately... (6) #mecfsatnih19
And abnormalities in the microbiota. Why spend so much time looking for abnormalities? That's what you must do to find a diagnostic test and treatments. AND if a pt comes in with symptoms we need objective findings to prove to others that this exists. (7) #mecfsatnih19
Studies found inflammation in the brain. Inflammation means activation of the immune system. MR spectroscopy confirmed at the conference that there is an increase in several molecules in the brain, including lactate. (8) #mecfsatnih19
A novel finding: in #pwME there are areas of the brain that are hotter than those areas in healthy people. A Swedish study found molecules in the spinal fluid that signal inflammation of the brain and signal damage to cells and attempts to repair that damage. (9) #mecfsatnih19
Why do #pwME feel fatigue and brain fog from standing? A presentation found orthostatic intolerance. Another summarized issues with energy metabolism. Komaroff refers to Naviaux's dauer, the body is unable to garner enough energy from oxygen and macromolecules. (10) #mecfsatnih19
Impedance in blood in #pwME, Davis's study, will be published in the Nat'l Academies of Sci. There were also post-exercise studies, such as 2-day CPET. #pwme have lower HR, BP, & breathing rate, & don't extract oxygen from blood as effectively as healthies. (11) #mecfsatnih19
The presentations also provided some clues re: what may tie all these abnormalities together. Is there a connection between energy deficit or blood flow that could explain the issues in the brain? (12) #mecfsatnih19
The presentations support an attractive theory: that ME is due to a mechanism meant to protect us: 'sickness behavior'. (It's called a behavior but that's not meant to imply decision-making. Sickness behavior is induced fatigue, lethargy, & metabolic changes.) (13) #mecfsatnih19
Inflammation inside the brain can induce inflammation, but intriguingly, so can peripheral inflammation in other parts of the body. One candidate is inflammation in the gut caused by microbiome alterations. (14) #mecfsatnih19
"We still have a long way to go, in this disease and in others; but this conference highlighted how far we have come". With efforts to attract new scientists into the field, he "left the conference excited and encouraged". (15) #mecfsatnih19
Whittemore on now: Lipkin collected carefully-characterized #pwME's samples and shared amongst all Collaborative Research Centers. Unumatz is looking at changes in the immune system, and Lipkin is looking into epigenetics. (16) #mecfsatnih19
They key is that they're all doing different experiments using the same exact specimens to examine each individual across different systems. They are analyzing that data now. We are hoping to see results of those studies very soon. (17) #mecfsatnih19
Dr Breen(?) Each Center has a nat'l advisory council to advise @NINDSdirector. NINDS working group has clinicians/researchers, reps from advocacy orgs & #pwME. An important goal is to attract & train new folks: critical for growing the field. (18) #mecfsatnih19
There is a RFI open until May 1. We would love for people to provide input into the process. We will use this to produce a public report that is presented to the NINDS. It will be shared w/everyone in the Trans-NIH Working Group. (19) #mecfsatnih19
Whittemore says @Invest_in_ME provided the model for the Young Investigators Workshop. About 50 attendees and about 25 supported by the NIH. They discussed how to apply for grants, the logistics of developing a career in #MEcfs and presented their own research. (20) #mecfsatnih19
"We want to develop a worldwide network of Young Investigators who can support each other," says Whittemore.
videocast.nih.gov has 'past events' if you want to watch the conference. Yay, a link! "It was exhausting, but you can watch it piece at a time." (21) #mecfsatnih19
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