To those who aren't sufferers, chronic fatigue syndrome often sounds like it's just stress related or psychosomatic — and ME/CFS has often been framed that way by medical professionals in the past. Now, Burmeister and other patients, clinicians, and researchers fear that the new, 15-member panel could repeat that mistake.

In general, medical experts in a particular illness or condition debate and create clinical case definitions and guidelines. But no single medical specialty claims ME/CFS. Patients often see clinicians in a range of specialties, including infectious diseases, immunology, neurology, rheumatology, and psychiatry. The closest parallel to a traditional medical society is the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, a scientific and advocacy organization of researchers, health care professionals, and others.

So when the Institute of Medicine announced provisional members of the panel last month, many patients were angry that more than half of the members — whatever their accomplishments in their own fields — were not known to have any professional expertise in ME/CFS. Many clinicians and researchers with experience in the field have already endorsed a set of diagnostic criteria that they say should be used as the starting point for any new case definition.

"I can't imagine any other field where this would be happening," said Burmeister, who grew up in East Germany, moved to the U.S. in 1999, and became a citizen in 2012. "You wouldn't have rocket scientists come up with guidelines for heart surgery. To have a majority of nonexperts on the committee — of course this is crazy."

A broad or imprecise definition of the illness could have a ripple effect. Patients like Burmeister fear that flawed results will undermine research into organic causes and lead to treatments more appropriate for depression and other psychiatric conditions than for their illness.

Last fall, several dozen top researchers and clinicians in the ME/CFS field signed an unusual letter of protest to Kathleen Sebelius, secretary of the Department of Health and Human Services, strongly urging her to abandon the IOM initiative. Dr. Daniel Peterson, one of the letter-signers and a well-known expert who has treated ME/CFS patients in Incline Village, Nev., for three decades, echoed Burmeister's concerns about the role of the nonexperts on the IOM panel.

"If I were redefining the criteria for diabetes, I would certainly want 25 diabetologists to render their opinion," said Peterson. "I wouldn't want neurosurgeons and psychiatrists and people who have never seen a patient. I can't imagine being on a committee for some disease I don't know about."

In the letter, the experts also criticized the health department's decision to spend $1 million on the IOM project, given that the National Institutes of Health only spends $5 million annually in research on the disease, far less than it devotes to many less common illnesses.

"Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease," wrote the experts. "Worse, this effort threatens to move…science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable."

One letter-signer, Dharam Ablashi, a prominent former researcher at the National Cancer Institute and currently scientific director of the HHV-6 Foundation, chided the federal agency. "Why do you want to spend $1 million to reinvent something?" he said. "The key point is, there are criteria out there that are working — they're not perfect, but they can be modified."

The Office on Women's Health at the Department of Health and Human Services, which is co-sponsoring the IOM project, responded to questions by referring to previously issued department statements, which noted that the institute is an appropriate venue for resolving such thorny issues and that its imprimatur would ensure maximum acceptance and credibility for the findings.

"The IOM has a singular reputation for providing biomedical recommendations on difficult, complex and controversial questions in medicine," read a FAQ from the department about the project. "The IOM process of developing consensus recommendations is widely accepted by professional societies and other medical institutions that disseminate clinical guidelines."

Not all patients and experts oppose the IOM initiative, and the issue of whether it is possible to cooperate with the panel and not be co-opted by it has been vigorously debated on social media. The CFIDS Association of America, a major ME/CFS organization that has frequently been at odds with grassroots patient advocates, has again caused grumbling in some quarters because of its support for the health department's IOM agreement. Some signers of the experts' letter have also been invited to join the IOM panel, and have accepted. Moreover, the panel appears to contain more acknowledged ME/CFS experts than many people had expected — seven out of the 15 members, if early reports are accurate.

Carol Head, president and CEO of the CFIDS Association of America, said she understood the concerns of those who oppose the IOM's involvement but noted that no one medical specialty owns the illness. "It lacks an established medical society as exists in other diseases, so it made sense to us that the IOM would be a place to start with this," she said.

The panel is expected to deliver its report in a year, and its guidelines are likely to be widely disseminated and accepted by doctors, so the stakes for patients are high. With any disease, accurate case definitions for both research and clinical care are essential. A case definition that is drawn too loosely and thereby includes too many people who do not have the illness in question will skew research findings and lead to unjustified and potentially harmful treatment recommendations. And case definitions that are too narrow end up screening out people with the illness who need treatment but might not be identified because of atypical disease presentation.

For diseases with reliable tests for biomarkers that indicate the presence of an infection or other abnormal physiological phenomenon, a positive result might be all that is needed for an accurate case definition. But for conditions identified through symptoms, like Gulf War illness and ME/CFS, creating a case definition that includes those with the illness while excluding those without it is far more difficult, especially if some of the symptoms are non-specific and subjective.

In particular, ME/CFS and depression can resemble each another; a loose case definition might end up including people whose primary complaint is depression, not ME/CFS. So it is important but challenging to determine whether depression caused the fatigue and other symptoms or if the patient is depressed because that patient is indeed very sick.

Leonard Jason, a professor of psychology at DePaul University in Chicago and a widely respected ME/CFS researcher, said that a good strategy for distinguishing between the illness and depression is to ask patients what they would do if they suddenly recovered. Those suffering from a major depressive disorder, he said, would likely say they didn't know. "But someone with ME/CFS would probably begin making lists of all the things that they wanted to do," he said.