Fibromyalgia – Can We Crack the Code and Put The Patient First?

By Donna Gregory Burch

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Donna Gregory Burch

Dr. Jarred Younger is the fibromyalgia community’s most impatient ally. For more than a decade, the University of Alabama at Birmingham (UAB) researcher has been working on cracking the mystery of what causes fibromyalgia and how to treat it.

He thinks it stems from brain inflammation, which prompts an overreaction of the body’s immune system. He has a dozen or so potential treatments that he’d love to test on patients to see if his theory is right, but he’s stymied by the National Institutes of Health’s (NIH) notoriously slow process for approving research grants.

At this rate, it’ll take his entire career just to test four of the treatments written on the dry-erase board in his office.

But there’s a faster way. Younger is in the early stages of creating a “fast-track clinical trial center.” That’s a working title, of course; it’ll probably end up with some wealthy donor’s name in front of it.

Or at least that’s Younger’s hope. He’s looking to raise up to $4 million over the next couple of years to make his fast-track center a reality.

As envisioned, the center would test out multiple treatments for fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) simultaneously. It would rely on the support of donors, cutting through the NIH’s red tape and long waits for funding. On average, it takes about eight to 10 years for a treatment to navigate through the NIH’s grant system before it’s ready for public use.

Younger’s center would cut that time to about three years.

“I am not critical of NIH for how they distribute funds,” he explained. “Given their limited budget, they have to be cautious to make sure they don’t throw large amounts of money at ideas that don’t work. The NIH process is good for science in general, but it isn’t designed to support clinical trials. So, the fast-track center is a supplemental, but needed research entity.”

Younger’s already had some success with acquiring private funding for his research projects. He’s probably best known in the fibromyalgia community for his research on low-dose naltrexone (LDN). At regular doses, naltrexone is an opiate antagonist used to treat addiction to alcohol and certain opiate drugs. But at very low doses, it’s been found to reduce the symptoms of certain autoimmune and central nervous system conditions, including fibromyalgia, ME/CFS, multiple sclerosis, rheumatoid arthritis and others.

Younger was the primary researcher for two LDN/fibromyalgia studies at Stanford University. Although small, the Stanford studies found LDN is actually more effective than the three drugs currently approved by the U.S. Food and Drug Administration to treat fibromyalgia. Thousands of fibromyalgia patients have cited those studies from Stanford while asking their doctors for an LDN prescription.

“If I had gone through NIH, there’s no way that information would be available to patients because I’d still be going through the phases of the trials,” Younger said.

Younger moved to UAB in 2014 to open his Neuroinflammation, Pain and Fatigue Laboratory. In addition to more LDN-related studies, Younger has other therapies that he’d like to test in fibromyalgia and ME/CFS patients, including luteolin, curcumin and dextromethorphan. He just needs the funding to do so.

“My goal for 2016 is raising funds to get the center started,” he said. “I think there are so many folks who will want to see this happen that we will be able to piece it together.”

The $4 million startup cost will fund the center’s research for at least five years.

The U.S. Department of Defense has already shown some confidence in Younger’s multi-treatment strategy by awarding a $700,000 grant to test nine botanical treatments in veterans affected by Gulf War Syndrome over the next 18 months. (Some believe Gulf War Syndrome, fibromyalgia and ME/CFS are related conditions.) Recruitment for the Gulf War study begins this month.

“If this works, this is a good base to say, ‘Look how much more information we’re able to get at using this model,’” Younger explained.

The center will officially debut in October during an upcoming pain conference hosted by UAB.

“I would hope the first half of 2017, [the research] could be rolling along,” Younger said. “That’s an ambitious timeframe, but that’s what I’m going to aim for.”

Undoubtedly, millions of fibro sufferers are hoping Younger reaches his goal. Current pharmaceutical treatments for fibromyalgia are effective in a minority of patients, and many in the fibro community are desperate for help.

Younger’s center could fast-track that relief.

“If we put the patient first, that means we have to get the information out as fast as we can,” he said. “It just requires a different way to do the science.”

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com, which includes a resources page on using low-dose naltrexone for fibromyalgia (www.fedupwithfatigue.com/low-dose-naltrexone-fibromyalgia). Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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