Hello. I’m Dr. Joan Grobstein. I’m a physician.
Here we are again.
At the beginning of the NIH State of the Knowledge Workshop, Dr. Mangan emphasized that the Workshop was “not designed to prioritize or establish an agenda for future initiatives.” But we need to do this. In the absence of leadership from the NIH, the CDC, this committee or any other agency in the Department of Health and Human Services, I’m going make suggestions that should be implemented within the next six months.
First, I'm going to present a case.
I have Pat Fero’s permission to talk about her and her son, Casey. Pat’s acute onset ME/CFS started in 1980 with a viral-like syndrome. Casey was born prematurely in 1982. He was first diagnosed with ME/CFS at age 9 and worsened at age 15. He died suddenly at age 23. An autopsy was done. The pathologist told Pat that Casey’s heart tissue was “loaded with viruses, inflammation and fibrosis”. The University of Wisconsin lost the heart tissue blocks. The viruses in Casey’s heart were never identified.
What does this case tell us about priorities and an agenda for future initiatives?
First, it tells us that it is very likely that ME/CFS is transmitted within families. Establishing the mode of transmission should be the highest priority. As far as I know, the CDC has never investigated family clusters. It also hasn’t investigated geographic clusters for more than a decade. ME/CFS should be a reportable disease, so that clusters can be identified. To make it possible for physicians to report the disease, they must have a precise case definition. The best definition available is the Canadian Consensus Definition. It should be adopted now and disseminated to all physicians. Until we know who has and doesn’t have the disease we cannot study it. Epidemiologic studies should start immediately. Special attention must be paid to identifying the sickest, housebound patients, many of whom aren’t receiving any medical care. This is a disgrace.
Second, Casey’s disease progressed over time and resulted in death. We don’t know the natural history of either untreated or treated ME/CFS, although many people with the disease are not only untreated but undiagnosed. The CDC should conduct observational, longitudinal studies of Canadian Consensus-defined ME/CFS.
Third, it’s very likely viruses are involved in ME/CFS, and myocardial infection is possible. Japanese researchers have identified “small heart syndrome” in ME/CFS patients, which may reflect cardiac infection. Of course, other organ systems, including the CNS and Gi tract, may be infected. Sites of infection may vary from person to person. It’s urgent that associated viruses be identified and treated, if possible. New antivirals may need to be developed. The NIH and the CDC should work together to identify viruses that are associated with or cause ME/CFS. This is a very high priority.
Fourth, medical schools don’t take ME/CFS seriously. The NIH should convene a meeting of medical school leaders to educate them about the seriousness of this disease.
Finally, Casey was not treated successfully. Treatments for ME/CFS exist. Expert ME/CFS clinicians are using antivirals, dietary supplements, sleep medications, and treatments for orthostasis among other therapies, and they are improving the lives of many patients. The NIH should convene a meeting of expert clinicians to formulate guidelines for diagnostic testing and treatment.
The CDC website is inaccurate and misleading. It needs updating immediately. For example, the CDC says that tilt-table testing for orthostatic hypotension is experimental. This is incorrect. The test has been used for 15 years at Johns Hopkins, and orthostasis is a frequent and treatable finding in ME/CFS patients. The website also says testing for viruses is not indicated, yet several clinicians are having success treating viral infections. The website should cite the Canadian Consensus Criteria as the correct definition for ME/CFS. Many people visit the CDC website for information about ME/CFS. It must be accurate.