Editor’s Note: Parents in a large AFM Facebook support group have shared their stories, and have yet to find a common factor among the children who have this illness. Some children have been vaccinated, some have not, some have had the flu shot, some have not. There has been some speculation about the possible cause being an autoimmune response to a virus, according to a discussion in the group.
The CDC has confirmed another 10 cases of Acute Flaccid Myelitis (AFM), the mystery illness that’s been paralyzing children across the country, bringing this year’s total number of cases to 72. AFM has been reported in 24 states, while there have been 396 confirmed cases from August 2014 through October 2018 according to the CDC.
While the CDC still doesn’t know the cause of AFM, the risk factors, long-term effects, or why the number of cases spiked beginning in 2014, the agency has learned the following:
- Most patients are children.
- The patients’ symptoms have been most similar to complications of infection with certain viruses, including poliovirus, non-polio enteroviruses, adenoviruses, and West Nile virus.
- All of the AFM cases have tested negative for poliovirus.
- Enteroviruses most commonly cause mild illness. They can also cause neurologic illness, such as meningitis, encephalitis, and AFM, but these are rare.
- CDC has tested many different specimens from AFM patients for a wide range of pathogens (germs) that can cause AFM. To date, no pathogen (germ) has been consistently detected in the patients’ spinal fluid; a pathogen detected in the spinal fluid would be good evidence to indicate the cause of AFM since this condition affects the spinal cord.
- The increase in AFM cases in 2014 coincided with a national outbreak of severe respiratory illness among people caused by enterovirus D68 (EV-D68). Among the people confirmed with AFM, CDC did not consistently detect EV-D68 in every patient. During 2015, CDC did not receive information about large EV-D68 outbreaks in the United States, and laboratories reported only limited EV-D68 detections to CDC’s National Enterovirus Surveillance System (NESS). During 2016, CDC was informed of a few localized clusters in the United States. Learn more about EV-D68.
In a CBS This Morning interview Tuesday, CDC director Dr. Robert Redfield said that while the agency still doesn’t know what causes AFM, “it doesn’t appear to be transmissible from human to human,” adding “[the] CDC’s been working very hard on this, since 2014, to try to understand causation and etiology. As we sit here today, we don’t have understanding of the cause. We are, you know, continuing to strengthen our efforts, working in partnership with state and territorial health departments, and academic experts to try to figure this out.”
“I’ve recently asked again to put together a task force to really try to look at where we’re at, and what else could we do to try to solve this problem. The good news is that it doesn’t appear to be transmissible from human to human. We don’t see clustering in families,” Redfield said. “I do think that this is a new occurrence in the United States, the AFM. Our – our suspicion is it’s caused by a single agent. That’s the dominant disease that we’re confronting right now.”
The CDC has come under fire for their response to AFM.
“Frustrated and disappointed — I think that’s exactly how most of us feel,” said Dr. Keith Van Haren, one of the CDC advisers on AFM and an assistant professor of neurology at the Stanford University School of Medicine.
Van Haren and other doctors who care for these children say the agency has been slow to gather data and to guide pediatricians and emergency room physicians on how to diagnose and treat the children struck with the disease, acute flaccid myelitis.
“This is the CDC’s job. This is what they’re supposed to do well. And it’s a source of frustration to many of us that they’re apparently not doing these things,” said Dr. Kenneth Tyler, a professor and chair of the department of neurology at the University of Colorado School of Medicine and another adviser to the CDC on AFM. –CNN
Frustrated healthcare professionals weigh in
AFM is rare – with less than one in a million people contracting it annually – however the number of suspected cases has been on the rise, frustrating healthcare professionals across the country.
“We really don’t know what is causing it in some kids now, and there definitely needs to be more research,” said Texas ER Doctor, Eric Higginbotham, adding “Some of these kids recover from it,” he says. “Some kids, once they have that nerve damage, there is really not a way to heal that. So, they stay in this weakened condition.”
“The CDC really seems to be out of sync with the conclusions that most scientists are coming to. We feel like we’re not being listened to,” said Dr. Keith Van Haren – CDC adviser and assistant professor of neurology at Stanford. “We don’t understand how the CDC has arrived at the place where they’re at.”
“This is a mystery so far, and we haven’t solved it yet, so we have to be thinking broadly,” said Dr. Nancy Messonnier, the CDC’s director of Immunization and Respiratory Diseases at the press briefing this month, adding that although enteroviruses can cause AFM, it’s not clear whether they are the main culprit.
Messonnier told CNN: “AFM is a destructive disease of the neurological system. If this virus was causing this damage, we’d expect to be able to find the virus in the spinal fluid of most of these patients, and we’re not,” adding “We cannot explain these three peaks of disease in [2014, 2016 and 2018] by enterovirus, and so the way that sort of any discriminating scientist would do, we’re trying to think more broadly and make sure that we’re not missing something.”
The CDC will meet next week with medical experts to discuss treatment considerations, according to Messonnier.