New Drug Treatment Holds Out Hope For Chronic Fatigue Sufferers

Chronic fatigue syndrome (SFS) is sometimes referred to as "yuppie Flu," because the first diagnoses were among affluent Americans in the 1980s. Sufferers faced suggestions that they'd invented a disease, because the symptoms were hard to classify and no-one knew the cause. Chronic fatigue sufferers face sleeping troubles, persistent lethargy, exhaustion, headaches, muscle pains and mental fogginess. It's diagnosed by symptoms, since no-one can offer an evidence-backed explanation for its etiology — the process that causes it.

Because no-one could explain how it happened, CFS was often treated as a psychological problem. While doctors experimented with treatments drawn from psychiatry, onlookers questioned whether the disease even really existed. Wasn't it just a fancy new way of saying some-one was run-down, and needed a rest?

While CFS often doesn't get any worse, it doesn't get better by itself either. Sufferers face years of living with a disease with no known origin, treatment plan or cure.

CFS compromises quality of life quite severely, so doctors look for ways to bolster quality of life where they can't treat the disease directly. Often, they'll look for symptomatic relief like painkillers and sleeping tablets. Lifestyle strategies might be taught to help cope better with sleep disturbances and the difficulty standing upright that is a common, perplexing symptom of the disease. Some people will do their own searching, finding complementary health treatments that help with the symptoms, including acupuncture and dietary changes, which can help with the IBS-like symptoms some CFS sufferers undergo. And doctors will often find themselves prescribing antidepressants to CFS sufferers who understandably find the disease depressing. 

But none of this is a constructive treatment plan, aimed at helping the patient get well per se. It's just combatting the symptoms, as they occur, symptom by symptom. And that's because it's hard to fight something when you don't know what it is. Worse, the emphasis on symptomatic treatment, psychiatric medication and coping strategies leads many to form the belief that CFS is a psychological problem, with all the stigma and denigration that comes with that. And it's probably not.

What Is CFS?

So far, we've talked about the "face" of CFS, the way the disease presents itself. But behind your face is you. What's behind the face of CFS? What is the disease, really?

Some possibilities include psychological problems. It can be hard to differentiate between CFS and major depression, and there's almost certainly some diagnostic overspill, with some people with CFS being given a depression diagnosis and vice versa. Or CFS could be a whole new mental health problem, one related to the "burnout" of the fast-paced yuppie years and the increaingly demanding American working week.

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CFS presents neurological symptoms, including balance disturbances and problems sleeping, and disrupted cognitive function, especially in the form of slowed reaction times and decreased concentration. These problems are found int traumatic neurological issues like head injury and stroke, as well as in degenerative neurological conditions. Could CFS be a neurological condition?

Then, there's metabolic disorders like diabetes and hypothyroidism. These alter the way the body works and can miimic CFS so closely that doctors frequently test patients with CFS-like symptoms for them. Could CFS be an as-yet-unknown metabolic disorder? Other shave pointed to autoimmune diseases ike lupus.

What CFS Really Is... And How To Treat It

Way back in 2009, the journal Science published a paper that suggested a link beterren CFS and a mouse virus. (Source: WSJ.) The paper was withdrawn when other teams failed to replicate the results. 

CFS was as much in the dark as ever. Until now.

Earlier this year, a team of Norwegian researchers ran a trial in which they asked CFS sufferers to take a drug that's normally used to knock down white blood cell counts in people with lymphoma and rheumatoid arthritis. Two thirds of the people who took it experienced major remission of CFS symptoms. 

What does major remission of CFS look like? 

Essentially, it's like coming back to life, says one sufferer.

"Karen" (not her real name) told interviewers: "I got an effect quite early on. I was suddenly getting bursts of energy for maybe a half-hour or so. Then gradually I felt better. Suddenly, it was okay to keep my body upright. I restarted my master’s degree and did it in half a year – I got an A. Then I started working full time. I was completely revitalized. Suddenly, I could be sociable again. I would go to work, go home, eat dinner and feel restless."

And what seems like a normal life for those of us lucky enough not to have the disease, like working and spending an evening with friends, is unimaginable freedom. So how did a drug designed to reduce white cell count break "Karen" out of the prison of CFS, and what hope does it offer to other sufferers?

The drug is called rituximab, and it's normally used to treat lymphoma, targeting the beta cells, which are the specific type of white blood cells responsible for making antibodies. In 2004, at Bergen's Haukeland University Hospital, clinicians Østein Fluge and Olav Mella were using it to treat a patient who had lymphoma... and CFS. While the rituximab had its expected effects on the patient's lymphoma, her CFS also went into remission. A few months later she had no CFS symptoms at all. Compared with other CFS treatment options,that was amazing. Curious, they put together a small, 29-person trial.

The Trial

Of the 29 participants, 11 were given a placebo and 18 rituximab. Of the 18 people who took the real drug, 11 experienced remission, in many cases complete remission. And it lasted for years. Some rituximab-medicated CFS sufferers have been entirely symptom-free for years. 

"Eleven of the 18 responders were still in remission three years after beginning the treatment, and some have now had no symptoms for five years," says Østein Fluge, who helped design the study.

Here's How They Think It Works

First, a virus infects you. You produce antibodies to fight the virus off. But then those same antibodies go to work, attacking your blood vessels and damaging the system that transports cellular waste, inlcuding lactate, away from your muscles. That would explain why CFS sufferes have all the symptoms of extreme muscular exertion (through the aerobic pathway) even when they haven't done anything. 

There's strong circumstantial evidence to back up this idea. Sufferers given a single dose of rituximab got better over a period of about four months — the time it takes to clear out existing antibodies from the body after the beta cells have stopped making them. Then they typically stayed asymptomatic for a year or so before gradually relapsing. And that's about the time it takes to rebuild the beta cell population. Finally, people who were given repeated infusions of rituximab got better, and then didn't relapse.

As Dr Nancy Klimas, who works on CFS at Nova Southeastern University in Fort Lauderdale, Florida, says: "I am very intrigued by the rituximab story. It’s particularly exciting when people seem to have experienced very long periods of remission, and even speak of recovery."

READ Feeling Fatigued? Adults Need Bedtime Routines Too, And Here's Why

A larger trial is in the works and rituximab could be coming to a clinic near you soon.