Needed: Research Dollars for Muscle-Wasting Disease

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It is a rare disease. Researchers estimate about 20 people in every 100,000 in the United States have myasthenia gravis, according to the Myesthenia Gravis Foundation of America.

That rarity has worked against those who would cure or find better treatments for the disease, Meriggioli said.

"Getting a drug company to be interested in such a small pool of patients, it's just not cost-effective for them," he said.

The nature of myasthenia gravis also makes it hard to research, Meriggioli said, as the disease's symptoms fluctuate wildly.

"Myasthenia can spontaneously get worse or get better, regardless of treatment," he said. "Trials need to take place over a longer period of time to filter out that randomness, and that is very expensive, especially for a rare disease."

That could explain the results of Benatar's review of research examining treatments for myasthenia gravis.

He looked specifically at whether there were any particular treatments that would alleviate the ocular symptoms of myasthenia gravis, and whether pharmaceutical treatments of symptoms reduced the risk of the disease growing worse.

"There's much less research of adequate quality than you'd expect," Benatar said. "We really turned up empty-handed.

"The most important observation is that there's very little data to steer us toward a best practice," he said. "There's a desperate need for studies to produce better evidence to show how to best treat these people.

Myasthenia gravis can be controlled, even though the evidence is weak for why the treatments work.

Doctors use medications called anticholinesterase agents to help improve neuromuscular transmission and increase muscle strength, according to the National Institute of Neurological Disorders and Stroke. Immunosuppressive drugs may also be used, as they improve muscle strength by suppressing the production of abnormal antibodies. Steroids also have proven useful in suppressing the immune system, Meriggioli said.

The thymus gland is often abnormal in myasthenia gravis patients, and a thymectomy has been shown to reduce symptoms in more than 70 percent of patients and can cure some individuals, possibly by re-adjusting the immune system.