By Donna Gregory Burch
Unlike fibromyalgia, there are no FDA-approved treatments for ME/CFS, leaving few options for relieving symptoms.
But in recent years, a growing number of patients have started using a little-known drug called low-dose naltrexone (LDN) as an off-label treatment, and now an Alabama-based researcher is planning the first trial to find out if LDN actually reduces the symptoms of ME/CFS.
The FDA approved naltrexone to treat addiction to certain opiate drugs in 1984. But in low doses (typically 1-4.5 mg), naltrexone enhances the body’s immune system by boosting the production of endorphins, which in turn promotes healing and lessens inflammation. So far, LDN has been found useful in the treatment of certain autoimmune and central nervous system conditions, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.
While at Stanford University, Dr. Jarred Younger conducted two small trials to find out if LDN might relieve fibromyalgia pain. The results showed LDN was actually more effective than the three drugs currently approved by the FDA to treat fibromyalgia.
In 2014, Younger moved his research to the University of Alabama at Birmingham and opened the Neuroinflammation, Pain and Fatigue Laboratory. He decided to test LDN in ME/CFS after reading testimonials on CureTogether.com, PatientsLikeMe.com and similar websites from patients who said their fatigue and pain lifted after using LDN.
“Multiple people were reporting it has improved [their symptoms] where other treatments haven’t helped much,” Younger said.
A number of researchers, including Younger, believe fibromyalgia and ME/CFS may be related conditions. Younger speculates if LDN works well in fibromyalgia patients, then it might also benefit those with ME/CFS. In July, he plans to recruit the first 20 patients from the Birmingham area to test his theory.
“We know LDN works for about 65 percent of the fibromyalgia patients. If I give this to ME/CFS patients, and 65 percent of patients improve, then there’s a shared pathology between the two,” he said.
ME/CFS patients have very few options to deal with the debilitating fatigue that’s the hallmark of their condition. Some physicians prescribe amphetamines, like Ritalin or Adderall, but this class of drugs can cause insomnia, rapid heartbeat, psychosis and other harmful side effects. These drugs also can become less effective over time.
“It’s not addressing the problem either,” Younger said. “It’s just sort of compensating for the symptoms. We really want to address what the disease pathology is and try to treat that.”
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Younger believes the symptoms of ME/CFS and fibromyalgia may be caused by brain inflammation. The brain contains microglial cells, which are constantly scanning and looking for problems within the central nervous system. When they discover a problem, these cells release chemicals, which cause fatigue, pain, cognitive disturbances and other symptoms commonly associated with ME/CFS and fibromyalgia. In a healthy person, these chemicals are supposed to slow down the body, so the immune system can focus on healing. But in ME/CFS and fibromyalgia, some researchers think this normal bodily response gets activated and won’t shut off.
LDN may work in fibromyalgia (and also possibly in ME/CFS) patients because it calms the microglial cells and reduces brain inflammation.
“Naltrexone, in very general terms, crosses the blood/brain barrier, and it suppresses that inflammation,” Younger explained.
Earlier this year, Younger began trying to raise around $4 million to fund a fast-track clinical trial center, which would enable his team to test out multiple treatments for ME/CFS and fibromyalgia simultaneously. It would rely on the support of donors, cutting through the federal government’s long waits for funding.
On average, it takes about eight to ten years for a treatment to navigate through the federal government’s grant system before it’s ready for public use. Younger’s center would cut that time to about three years. (Click here for more information on the fast-track clinical trial center.)
To stay up to date on Younger’s research projects, sign up for his email newsletter here. His website also includes an online survey for those who may be interested in volunteering for future research trials.
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 helpful resources page on using low-dose naltrexone for fibromyalgia and ME/CFS. 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.