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The Great NIH Exercise Initiative: A Boon for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia?

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By Cort Johnson • • January 10, 2017

The Great NIH Exercise Initiative: A Boon for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia?
Reprinted with the kind permission
of Cort Johnson and Health Rising

The NIH under Dr. Francis Collins has poured out major initiatives, none of which may be more meaningful for ME/CFS than the “Great Exercise Initiative” (my name). We know at the coarse level what happens during exercise but we know little about what happens to the body at the molecular level – the level that probably matters most for ME/CFS/FM. 

This physical activity initiative aims to fundamentally change our understanding of what happens to the body on the molecular level when we exercise.”  James M. Anderson, M.D., Ph.D. 

In Part II of a three-part look at recent major NIH efforts that may significantly impact chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM), we find the NIH bringing its big guns to bear on the most problematic area of all for ME/CFS patients - exercise.
Few diseases, if any, are as defined by problems with physical activity as chronic fatigue syndrome (ME/CFS), and few diseases affect physical activity as dramatically as does fibromyalgia. Nobody, of course, knows why mild exercise can cause such relapse in ME/CFS or why more serious exercise can cause such pain in FM.
Maybe that's not such a surprise. It turns out that researchers know surprisingly little about what happens when we exercise. Sure, they know what happens to the heart rate, blood flows, air intake, oxygen usage, etc., when we exercise, but we know very little about what happens to the body at the molecular level. That's important, not just for exercise physiologists, but for ME/CFS and FM as well; it's at the molecular level where the key to ME/CFS and FM probably lies.
Our understanding of the molecular changes that occur during exercise is going to entirely change - and probably fairly rapidly - when the NIH's Molecular Transducers of Physical Activity in Humans Program (MoTrPAC; Motor…Pac - get it? Kind of?) gets rolling.
MoTrPAC is going to take a deep dive into the world of exercise. By the time they're done, we're going to have new ways to analyze what the heck goes wrong during exercise in ME/CFS.
You don’t think Dr. Collins wasn't thinking of chronic fatigue syndrome (ME/CFS) when he said this: 

“The development of a so-called molecular map of circulating signals produced by physical activity will allow us to discover, at a fundamental level, how physical activity affects our health. This knowledge should allow researchers and doctors to develop individually targeted exercise recommendations and better help those who are unable to exercise.” Francis Collins 

I do… In fact, the optimist in me wonders if the fatigue RFA grant Collins was reportedly considering for ME/CFS morphed into this $170 million (not completely funded) project. (Why would Collins do this kind of run-around? Because he can get buy-in from the Institutes to spend a ton of money to study exercise. He can't get buy-in to spend that kind of money on ME/CFS.)
This is a biggie: it contains seven clinical sites, seven chemical analysis sites, animal models, a bioinformatics center, a coordination center, and finally and perhaps most importantly for diseases like chronic fatigue syndrome and fibromyalgia, the open sourced data information center.
Two of the 19 grants (Ron Davis and Dr. Montoya, take note) are going to two Stanford researchers (Michael Snyder, Stephen Montgomery) to identify and characterize all the molecules that form during or after exercise. Yes, that's after exercise as well…what an opportunity to study post-exertional malaise in ME/CFS.
At the end of this huge grant ($15.7 million - equal to the entire budget of the upgraded NIH ME/CFS program), these two Stanford researchers will know more about genomic, transcriptomic and epigenomic effects of exercise than anyone else alive…and it's all going to happen in the next five years.
One imagines that Nancy Klimas and Gordon Broderick with the multiple data points they've collected before, during and after exercise might have something to say to Drs. Michael Snyder and Stephen Montgomery, PhD. Of course, Dr. Montoya is using exercise in his immune studies at Stanford as well. One might think these researchers might be interested in the growing exercise data collected on the most exercise challenged illness group there is.
What an excellent control group ME/CFS patients would be! How better, after all, to explicate what goes right in exercise than by understanding what can go so wrong? Lead Stanford researcher Michael Snyder might very well agree:
“A lack of physical activity is a major factor in multiple diseases. This program provides an exciting opportunity to learn the molecular mechanisms underlying physical activity, with the goal of enabling new approaches to improving or maintaining individual health.”
Michael Snyder
Personally, I would put finding ways to enable ME/CFS patients to finally do the exercise they've been yearning for so many years as a top priority. One wonders how many ex-athletes - Jamison Hill and others - are out there? (Please take the survey.) Anecdotal reports suggest they abound in ME/CFS. Some people think ex-athletes may be over-expressed in ME/CFS. Thirty-seven years ago, I was an avid runner and exerciser. Never did I dream such a fundamental part of my life could be taken away so completely.
Even if the Stanford group can't find a way to include a few ME/CFS patients in their huge study, within five years or so we should have a bevy of molecular targets that Ron Davis, Derya Unutmaz, Patrick McGowan, Ian Lipkin, Gordon Broderick, Zaher Nahle or other ME/CFS researchers interested in the molecular roots of this disease should be able to analyze.
Stanford isn't the only possible ME/CFS connection. Marcas Bamman at the University of Alabama at Birmingham's "Center for Exercise Medicine" will lead one of the clinical centers. One wonders if he might be interested in what's happening in Jarred Younger's Neuroinflammation, Fatigue and Pain Lab on the same campus.
Plus, included in those omics (genomics, epigenomics, transcriptomics, proteomics) analyses are extensive metabolomics studies as well. MoTrPAC isn’t just whistling Dixie with regard to metabolomics either. The Emory Chemical Analysis Center in Georgia appears to be almost entirely devoted to metabolomics. Boasting a "state-of-the-art ultra-high resolution accurate mass high-field Orbitrap tandem mass spectrometer," the group will use "global, targeted and spatially resolved metabolomics" to produce "unequivocal chemical identification(s) of novel molecular transducers." The Mayo Rochester site will also attempt to fuse proteomics and metabolomics date to generate molecular maps of physical activity.
What a serendipitous project this is. Just as ME/CFS research at the NIH starts to finally begin to ramp up (expect an announcement on that in the next couple of weeks), it embarks on an ambitious project to understand the molecular roots of the most problematic activity of all in ME/CFS - exercise. For once we have good timing.
Check out Part I of the series on the big NIH Initiatives under way:
The Electroceutical Revolution - an ME/CFS and FM Perspective.

About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.

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