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

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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Authored by: Donna Gregory Burch

There are 15 comments for this article
  1. Mary Milligan at 5:06 am

    I’ve been suffering from fibromyalgia and other conditions since the 90’s so I don’t haft to tell you all the treatments /theorys/testing I’ve been subject to . However having just had a brain scan because of new symptoms shaking and hand zapping ect they found no symptoms in the brain so my faith that it stems from brain swelling is to say the least void.

  2. Jean Price at 9:50 am

    As I read these comments I am struck once again at our tendency to to dispute other’s comments instead of critiquing the article, or adding our stories to it, both to confirm or deny any first hand knowledge correlations. Pain is so very individual, even when the underlying cause is the same or similar. And what people have found that works for them may seem odd or “unproven” or even against something you’ve experience or read about. Yet this doesn’t mean their comments are any less important or should be condemned or they should become candidates for our target practice! I’ve used unconventional methods that have helped and “proven” methods that haven’t. My point is, we see many comments from people defending their point of view from attack rather than from just plan old disagreement, and I’ve been guilty of this too. But I think it’s something to hold up occasionally so we don’t risk our pain level perhaps coloring our sense of fair play. I have a rule at home about others doing this for me if I seem to be grumpy or overly confrontational when engaging them. Many times I find I would have been better off to tend to my pain before discussing something. Just a little reminder that pain influences extend out from us in both good and not so good ways.

  3. Steven Blake mba at 4:25 am

    Hi Julie I am not kidding, nor have I earned a penny from this. I helped someone with M.E. who made rapid and major improvement and then went on to help several others with fibromyalgia start on the road to recovery, so it is not just a theory. I have nothing to gain from this, just helping people. The issue is, if the people recovering go back to their “driven” ways the illness comes back. and there is nothing anyone can do to help someone who will not be helped. As for symptoms and the issue of changes to the physical body these are simply adaptations of the body reflecting the constant pain and fatigue, they are the effect not the cause. So the choice is there, simply read my page and see if you recognise yourself in that description (in which case you have the answer), or ignore it and wait forever for a “cure” that will suit you (and that’s going to be a very long wait). This is a very real illness no different to a heart attack or a broken arm and my answer is just as real. Please do not compare me with the researchers who just seem to do it for large grants or wages and the pharmaceutical companies who will make millions. they have never helped anyone yet and I have – for FREE.

  4. Kristine (Krissy) at 12:28 pm

    I was just reading for about 3 hours on ME/CFS and Fibro and I believe the complexities for these diseases are enormous, for lack of a better word. I don’t mind what the NIH is doing as it is more complete than other recent studies:
    http://www.medpagetoday.com/Neurology/GeneralNeurology/56772

    I have a comment on this article, but it isn’t published yet.

    Then this is a must-read, again with in-depth consideration of ME and Fibro:

    http://www.prohealth.com/library/showarticle.cfm?libid=28733

    While I appreciate any research, I agree with Julie-Ann on this. We need to continue with research, not quoting what we “think we know.” And while budgets are always a concern, why wouldn’t this researcher join in with one of these big projects to come. Are you in competition with the NIH?

  5. Monica Demers at 1:48 pm

    Dr. Jarred Younger,

    Please contact me by email.

    Thank you,

    Monica Demers

  6. James Fugedy, MD at 4:47 pm

    5 20-minute treatments of transcranial direct current stimulation (tDCS) reduced fibromyalgia pain by 50% in the Harvard study published in 2006. tDCS also reduces fibro-fog and fatigue. tDCS is non-invasive, painless, easy to do and without adverse or side effects. Since 2008, the Brain Stimulation Clinic in Atlanta has provided training and supervision for self-administration, making tDCS universally available and affordable.

  7. Cerys at 1:56 pm

    Finally, some good news – a serious researcher willing to put the patient first!

    I disagree with his thoughts on NIH grant decisions. Government waste is abhorrent – 1.1 BILLION for addicts; millions “lost” by FEMA or given to fraudulent claimants; “foreign aid” that disappears, and more. The NIH, like the CDC, is corrupted by political agenda and cronyism.

    Still, Dr. Younger’s attempt to bring more clinical understanding of fibromyalgia and potential new treatments is refreshing news.

    Fibromyalgia remains a diagnosis of exclusion, a clear indication that the cause is NOT fully known. Which begs the question of whether many patients, especially with severe impairment, actually suffer from a different illness or undetermined comorbid conditions. Determinate testing and clear differentiation of the condition based impairment levels are sorely needed.

    Far too much ignorance about what fibromyalgia patients truly experience abounds. Much of the public understands it only in its mild form. Some rheumatologists, nurses, and very vocal online activists still reject fibromyalgia (and ME/CFS) as legitimate. So I hope Dr. Younger’s approaches not only yield viable treatment options, but reliable scientific evidence to bring an end to the insults and attacks on patient character.

  8. Nancy at 10:48 am

    Why isnt low dose naltrexone being offered to fibro patients. I have asked a few docs about it and they just havent used it. Also its not one of the accepted treatments. If NIH wants to reduce opioid prescriptions they should put research on high priority. Am I crazy?

  9. Jean Price at 10:39 am

    I can’t help wondering what is motivating this doctor to work so hard on this. I know fibromyalgia is misunderstood and limits many from any quality of life. Yet other diseases do this also and don’t have such a rigorous researcher working on them. Then he talks about putting the patient first, and that’s a novel idea in this day and age! Especially for a researcher! Both for prevention and treatment. Perhaps that is his driving force…it would be nice if it were. Many areas of fibromyalgia need research…and doctors need to be educated about treatment options also. I wonder if he has interviewed patients to find out what they have tried that helped. I do think this area of research…patient input…is usually lacking. Dave, I know some treatment plans don’t work for everyone, but if it would even help a few people, you might think about sharing your success story. I personally know several who have this disease and they are defeated by it.

  10. Julie-Anne Braun at 9:32 am

    Steven Blake – “It is already known what causes fibromyalgia.” Are you KIDDING me?

    I read more than 300 current studies just last week, and they’re still all over the board! Some people believe it’s autoimmune, others say it’s a malfunction of the sympathetic nervous system, some believe it’s peripheral neuropathy, and the list goes on and on. I looked at your website, and while I agree that the majority of us were overachievers, prior to the onset of the debilitating symptoms, that’s not the whole picture. It does not address the increase in the number of peripheral nerves near the skin, elevated levels of Substance P, decreased levels of serotonin, nor-epinephrine, etc. etc. etc.

    Defining it as a behavioral issue or character trait is a great way to line your pockets and sell your program, but doing so would be irresponsible and hold us back from getting to the ACTUAL cause of this illness.

  11. Steven Blake mba at 8:57 am

    I am amazed by this. It is already known what causes fibromyalgia. Many people have come to the same conclusion. It doesn’t need money pouring in, just that people understand what is already known and take action. I personally came to a conclusion and since then many others have found the same answer, including the Fibromyalgia association. In a nutshell everyone with the illness is driven beyond their physical and mental capacity. Their unconscious mind then operates a safety system of pain and fatigue in order to give them chance to recover, but their drive make them fight on, and with that comes the need for more pain and fatigue. The unconscious sees giving them pain and fatigue as they only way of stopping their drive, that it thinks will kill them. If the person with the illness would accept the message and slow down and be kinder to themselves then the unconscious can and will release them from the pain and fatigue. How do I know? Because I have helped several people on the road to recovery and they can fully recover. The only thing stopping them is that drive, and often as they recover the start to overdo and over-think which triggers back the need for the pain and fatigue. I explain it on my website which is free to visit and should give you the answer! It really isn’t complicated….

  12. Mark Ibsen. MD at 7:09 am

    Good news:
    While waiting for the research we can help patients with a safe anti inflammatory for neurons- medical marijuana.

  13. Dave at 5:25 am

    While new treatments may be very helpful- we aren’t making full use of existing treatments r combining their benefits.
    As this article indicates, testing new treatments. is usually expensive, subject to lots of bias, is slow, and has yet to make that much of a difference in the real world. Even though “the cause” for peptic ulcer and its cure has allegedly been found- the prevalence of peptic ulcer has not changed dramatically. Furthermore- the scientific community was very slow in believing there is a cure for peptic ulcer.
    As many cant wait till the research community comes up with much better treatments- people in pain and people with fibro(and I was one of them) should learn of and make full use of the many treatments that have been used for fibro- and if they aren’t enough you are free to create your own methods for addressing your condition. After all it is very uncertain whether future treatments will be very magical- especially since the medical community doesn’t believe in cures- or prevention, for that matter- they just believe in “treatments”.

  14. Carole Porter at 3:58 am

    Thank you Dr Younger for tackling this issue. So many of us are hanging on and hoping beyond hope that you and your colleagues can do this! Praying for you!

  15. Doug at 3:55 am

    A sure sign that our government is so screwed up. They spend BILLIONS, bordering on trillions researching effective ways to kill people and testing this research using the wars we are involved in. The Department of Defense donating $700,000 is an insult when since 2002 they have actually miss placed 10s of billions of dollars but Congress just keeps giving them more.
    What our government needs is a giant enema to get rid of all the useless cr*p. We see the politicians campaigning every day. They are telling us how much they are going to help us but taking campaign contributions from defense contractors and other big business and these contributions are all ready tax payers money that these businesses received for products or services that the government has not yet received.
    We need to audit the federal government and the political parties and prosecute the wrong duets. The Lobbying process should be deemed illegal and companies and organizations who break these laws should be hit with fines large enough to devastate their profit margins. Then these fines should be used for medical research and universal health care.