(Thanks again to  Julie Rehmeyer for allowing Health Rising to repost her two part blog series originally published on The Last Word on Nothing.)

This is Part Two of a post on myalgic encephalomyelitis/chronic fatigue syndrome — or just ME/CFS — which is a disease that 1) knocks people right out of the game and 2) doctors can help with (though not as well as one would like). But most doctors haven’t a clue, often even viewing the illness as psychosomatic and untreatable.  Part One was yesterday, and it left off puzzling about why doctors are so unknowledgeable.

Reading about the history of the illness made the situation seem far less inscrutable. The Centers for Disease Control and Prevention first investigated it in the mid-1980s, when a few hundred people near Lake Tahoe suddenly got symptoms much like mine. A couple of doctors documented abnormalities, also much like mine, and noted that the malady fit the profile of myalgic encephalomyelitis (ME), an illness that had cropped up sporadically for decades.

Purported epidemics usually turn out to be nothing more than coincidences, though, and CDC investigators found the abnormalities peculiar and the symptoms suspiciously diverse. They performed a quick investigation and wrote up a report downplaying the illness. But concern continued to grow, and a manuscript outlining the abnormalities was being prepared for the Annals of Internal Medicine. So investigators created a definition for the illness, but they kept it broad, disregarding the specific findings and requiring six months of fatigue along with several picks from a grab-bag of other subjective symptoms, like sore throat, swollen lymph nodes, and brain fog. They named it “chronic fatigue syndrome,” and they tacitly subsumed myalgic encephalomyelitis within this new illness (which the federal agencies now often call ME/CFS).

With such a broad definition, CFS suddenly applied to widely varying patients with few shared abnormalities. As a result, many doctors came to view the CFS grab-bag as a psychosomatic illness. The triviality of the name “chronic fatigue syndrome” reinforced the skepticism. After all, aren’t we all tired? The name makes the illness that made it nearly impossible for me to stand up or talk or do my job sound very much like the everyday tiredness most folks push through.

Enough good science would dispel this notion, but the illness hasn’t easily yielded its secrets.

More shockingly, federal agencies have often impeded progress. In 2005, the CDC

broadened the definitionstill further, requiring low levels of symptoms other than fatigue, and the number of patients who qualified for the illness increased by six to ten times — including some depressed people, pregnant women, and people suffering from the side effects of drugs. This and other broad definitions have caused huge problems in the research, especially through confusing ME/CFS and depression.

The CDC has reinforced this confusion in a variety of ways. For example, a group of UK researchers primarily uses a still broader definition of the illness, requiring no symptoms at all other than fatigue. In 2011, this group released a large study in the Lancet evaluating graded exercise and cognitive behavioral therapy for CFS patients. Although the researchers claimed that the two were “effective treatments,” the study reported no improvements in employment, health insurance claims, or welfare claims. About 15 percent of patients reported feeling better, but after a year of treatment, patients were still unable to walk as fast as those in heart failure (on average), and there were no other objective signs of improvement. The finding was trumpeted in headlines around the world: “Got ME? Just get out and exercise, say scientists,” reported The Independent.

Rather than helping to clarify the muddle, the CDC increased it. It has long embraced graded exercise therapy, putting it prominently on its website and suggesting that exercise will restore even bed bound patients to daily functioning — though the UK study showed that such expectations are highly unrealistic. The website doesn’t point out the lack of evidence that exercise is safe or useful for severely ill patients (the UK study excluded them), and while it cautions against overdoing exercise, it doesn’t mention how difficult that can be to avoid and doesn’t mention the objective guidance patients might get from the findings from two-day exercise tests.

On top of that, the website recommends cognitive behavioral therapy but almost none of the treatments I got from Klimas, like blood pressure regulation and increased monitoring for cancer. It is the primary source of information about the illness for most U.S. general practitioners, and as a result, many doctors recommend no treatments other than some symptomatic care along with therapy and exercise to all their CFS patients, without impressing on them the extreme care that is essential to exercise safely. For years, U.S. experts specializing in the disease have strenuously objected and pleaded for changes, but modifications have been only minor.

Little wonder, then, that doctors tend to be skeptical about whether the illness is real and have no idea how to treat it.

Money is the other big problem. In the late ’90s, the CDC diverted $13 million appropriated for ME/CFS research to other projects, lied to Congress about it, and was caught by a whistleblower. The government now spends a mere $5 million a year on this illness; by comparison, it spends $3 billion on HIV/AIDS (which also affects about a million Americans). Even Ian Lipkin, the famous “virus hunter” who helped disprove the theorized XMRV viral link to ME/CFS, couldn’t get the $1.2 million he needs to study the microbiome in ME/CFS patients from the government. He has now turned to crowdsourcing (with impoverished patients eagerly contributing).

This fraught relationship with the federal agencies is the backdrop for the revolt of the ME/CFS community in response to HHS’s latest plan to have the Institute of Medicine develop a new definition of the illness. The specialists who requested that the contract be cancelled argued that they had already developed a good definition themselves, one requiring exercise intolerance as well as abnormalities in neuroendocrine, immune and autonomic functioning. But HHS continues to use a broader definition and has instructed the Institute of Medicine to consider many definitions, including the very general ones that can make the illness appear psychosomatic. Furthermore, more than half the members of the Institute of Medicine committee have no professional experience with the illness. As Dr. Derek Enlander, an ME/CFS specialist at Mt. Sinai Hospital, put it, “Do you want a podiatrist to treat your grandfather with lung cancer?”

Klimas, my doctor (now at Nova Southeastern University), was among those who signed the letter requesting that HHS cancel its contract with the Institute of Medicine. I asked her why she was concerned. “I’m afraid they’re about a year early,” she said. If HHS had waited, she explained, they could have developed a disease definition grounded in data, and that’s what will give a definition the heft needed to change attitudes. Just a year would be enough: Several large studies are now collecting tissues from more than a thousand patients and controls, looking for the telltale biological indicators that most effectively distinguish the two groups. Furthermore, Klimas said, without that evidence, a skeptical committee might dismiss the results of the many small studies that are now most revealing — and could as a result develop a broad definition that would exacerbate the current confusion.

HHS has pushed forward despite the intense concern from patients, advocates and professionals in the illness, and their seeming disregard undermines their effort. “If you have a great review but you don’t have buy-in from the vested communities, you’ll have problems,” says Leonard Jason of DePaul University, the leading expert in ME/CFS definitions.

These squabbles are heartbreaking when the needs of ME/CFS patients are so great. Even the high quality treatment I got from Klimas helped me only slightly. Later, I heard from patients who had significantly recovered through assiduously avoiding mold, and though I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. I’m nearly recovered. I can go running, write articles, travel with my new husband – and every time I do, it feels like a miracle.

My strange experience leaves me with a thousand questions. Is mold sickening others with this illness? If indeed exposure to mold triggered my ME, why did it make me so sick when many seem to tolerate it just fine? Do other environmental toxins contribute, or is mold the whole problem? Do only certain kinds of mold cause trouble, and if so, which ones? Could my experience offer a clue that would lead to a cure, or even better, prevention? And the many possible causes besides mold need to be investigated as well – viruses, autoimmune breakdowns, other toxins.

Personally, my confidence in the true experts on the panel (including, now, Klimas) is sufficient that I expect – guess – hope – that the Institute of Medicine will develop a definition that’s moderately specific. But it almost certainly won’t put the definitional controversy to rest or give rank-and-file doctors a current, scientific understanding of the illness. Doing those things will at a minimum require a definition that’s grounded in data — data that’s still being gathered.

And we need to do better than this. We shouldn’t be wasting so much money and energy on ill-conceived efforts. Patients should be treated with respect, both by their doctors and by the federal officers whose job is to guide the effort to research their illness. And our nation – for its own economic self-interest, if nothing else – should make an investment in researching this illness that is in proportion to the devastation it causes.

• See Pt 1 of Julie’s blog series here. 
• Julie talks about her substantial recovery

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Julie is working on a book about Chronic Fatigue Syndrome

Julie Rehmeyer is a math and science writer in Santa Fe, NM. She is a contributing editor for Discover Magazine and has written for Science News, Wired, Slate, Science, and other publications. She is working on a book about her experience with ME/CFS and the science and politics of confusing illnesses. She recently wrote about her father for Aeon.

The top photo, of Dr. Nancy Klimas, is a still from a movie about ME/CFS, called Canary in a Coal Mine, by Jennifer Brea, Deborah Hoffmann, Blake Ashman, and Kiran Chitanvis.

The bottom photo is by John Kadlecek and is of the campsite in Death Valley the author went to in order to get clear of mold.