- Last Updated: 25 November 2015 25 November 2015
The long-term patients
In designing this and the earlier study, Dr. Bell gauged patients' signs and symptoms via an exhaustive list of objective measurements. The variables ranged from general concerns like fatigue to specific problems like headache, muscle pain, and lymph-node abnormalities. He studied physical functions, emotional symptoms, and mental functions (including memory and cognition) for an in-depth portrait of health status.
Patients were also asked, more subjectively, how well they thought they were. Remarkably, even when they knew they were participating in a medical study, many patients with severe symptoms overstated how well they were.
As with the 13-year study, to which this was a follow-up, 20% of the patients studied were fully disabled. (The study concentrated only on those who were still ill, not those who had recovered. "Those who got better stayed better," Bell asserted.)
Dr. Bell once again divided the unrecovered-but-not-disabled patients into two groups: persistent or chronic cases, and remitting ones. Patients in the first group were not "okay" in any way; they suffered from persistent symptoms, and functioned poorly.
People in the second group—the remitters—continued to experience many symptoms, but functioned well. Those in the control group (healthy individuals used for comparison to the ME/CFS study patients) had no symptoms and had normal functioning levels.
"Health-identity confusion" seemed to plague those in the remitting category. They considered themselves to be in good health, but all still had symptoms and abnormal lab tests indicating that something was physically amiss.
On the symptom scales, the remitting patients' scores fell about half-way between those of controls and those of chronic patients. A healthy person's score on one symptom might be zero (0), e.g., a chronic/persistent person's score might be 10; and a remitter's, in the middle at five.