“This study may help identify risk factors that make certain individuals more likely to develop ME/CFS after an infection and may provide additional insights into biological causes of this debilitating disease,” said Vicky Whittemore, program director at the National Institute of Neurological Disorders and Stroke.
One aim of the new study is to assess the natural history of and risk factors for the maintenance of ME/CFS following infectious mononucleosis (IM).
The catastrophic collapse of Tony Wallace’s life began slowly and silently.
An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.
The NIH study is focusing on people who came down with the disease after an infection, of any sort, within five years. That initial infection is long gone but maybe, the body’s normal reactions to illness went into a destructive tailspin. Nearly 500 patients have called seeking to enroll in NIH’s study that is putting a few dozen under the microscope, with a barrage of sophisticated tests few hospitals can offer under one roof. “The ignorance about the condition just vastly dwarfs what we know about it,” said Dr. Walter Koroshetz, director of NIH’s National Institute for Neurological Disorders and Stroke, which is leading the research.
New warnings about the risk of dangerous breathing difficulties when gabapentinoids are used with opioids or by certain patients must now appear on product labels, the U.S. Food and Drug Administration announced Thursday.
Gabapentinoids include: generic gabapentin and brand-name gabapentin marketed as Neurontin and Gralise; gabapentin enacarbil, marketed as Horizant; and generic pregabalin and pregabalin marketed as Lyrica and Lyrica CR.
In a breakthrough 2014 study in Japan, PET (positron emission tomography) scans of ME/CFS patients brains found significant inflammation in the amygdala, thalamus, and hippocampus that correlated with reduced cognitive function, pain, and depression. So far, PET scans have been performed on 19 male patients (26-54 years old) and 38 females (25-60 years old) of which about 40% have been found to have significant inflammation in the brain. Of these, three men have already started the drug trial. In this clinical trial, a PET scan and various tests are performed before any medication is started. After four months of administration of existing drugs currently used to treat cerebral infarction, various tests will be performed again to see if inflammation and symptoms are relieved. By the end of 2020, a total of 90 patients will be scanned, of which 30 patients with significant inflammation will join the trial. If the drug trial demonstrates positive results, there is the possibility of the development of new drugs to treat ME/CFS symptoms.
“This research gives us additional evidence for the role of the immune system in ME/CFS and may provide important clues to help us understand the mechanisms underlying this devastating disease,” said Vicky Whittemore, Ph.D., program director at NIH’s National Institute of Neurological Disorders and Stroke (NINDS)
It’s been almost fifteen years since I was taken down by a mystery illness. These days I am functioning at about 80 percent of my physiological capacity – and that feels like remission to me. I manage my health by eating a mostly plant-based diet, exercise, stress reduction, some supplements, and daily dosing with a CBD-rich tincture, with occasional THC-rich cannabis at night.
Not everyone will go through these stages in the same way or in the same order that I have, but I’m confident that this list will sound familiar, both to those who are chronically ill and to those who care for them (if the former are fortunate enough to have the latter—I recognize that not everyone is).
“If you have moderate or severe ME, it will take considerable effort and thorough preparation just to get out of your house to go see your doctor. This time, however, it was not just getting out of my house in northern Ibaraki, but I had to travel all the way to Tokyo to take the Eiken Grade 1 or the uppermost level of the English proficiency test in Japan”
Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness.