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.
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. "You wouldn't have rocket scientists come up with guidelines for heart surgery.
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. Patients often see clinicians in a range of specialties, including infectious diseases, immunology, neurology, rheumatology, and psychiatry.
The Department of Health and Human Services announced in September that it had requested the Institute of Medicine, an independent, highly regarded affiliate of the National Academy of Sciences, to conduct the study. Few would claim that describing an illness with enough accuracy for clinicians to recognize it and treat it effectively is simple.
But for most illnesses, creating diagnostic criteria — known as a clinical case definition — is not the stuff of high drama and conflict. 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.
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.
"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.
She blogs extensively about her illness and in 2012 testified before a Food and Drug Administration panel considering whether to recommend approval for Ampligen.
(The panel voted 8-5 against it, citing insufficient safety and efficacy data.) In recent months, her blog has doggedly tracked the creation of a new, federally commissioned panel charged with reviewing and updating the diagnostic criteria for the disease. 27, Burmeister plans to tell the members of the panel why she thinks their project stinks.
Experts now believe that ME/CFS is likely a cluster of closely related conditions, triggered when an acute infection, or some other physiological insult such as exposure to environmental toxins or mold, kicks the immune system into a prolonged state of hyperactivation.