Disease experts are baffled about the cause of a rare, polio-like paralyzing condition called acute flaccid myelitis (AFM) that mostly affects children.
Since August 2014, the Centers for Disease Control and Prevention (CDC) has been made aware of an increased number of people across the US with AFM for which no cause could be found.
The CDC has been actively investigating this illness since then. From January 1 to December 31, 2016, a total of 138 people in 37 states across the country were confirmed to have AFM.
So far in 2017, the CDC has received information for five confirmed cases of AFM.
Yesterday, NBC News reported that children with AFM have been tested for more than 250 different viruses, and so far, no single one appears to be a major cause of the condition:
Not only that, but they can’t say who’s more at risk or how cases tend to progress, Tracy Ayers of the Centers for Disease Control and Prevention told a meeting of the CDC’s Epidemic Intelligence Service.
“We have tested for over 250 different organisms that could be causing this,” Ayers told reporters. “We are also expanding to look at non-infectious diseases.”
“After a decrease in 2015, acute flaccid myelitis cases increased during 2016 raising concerns of a resurgence,” Ayers and colleagues wrote in a brief summary.
Ayers described the case of a girl in Arizona who became suddenly paralyzed:
“During the day she was fine but she was gradually not feeling good and by the time it came time to go to bed — the bed hurt,” Ayers said. “Everything hurt to touch.” The mother put the girl into the bath to relieve her pain and became worried when the girl’s head went floppy. She rushed her to the emergency room and the muscle weakness worsened so much that the child was put on a ventilator to help her breathe.
There is no specific treatment for the condition. Ayers said physical therapy was helping this girl regain strength.
“This is such a brand-new disease that we don’t know what the long term outcomes are,” Ayers said.
Initially, doctors thought there was an association with a virus called EV-D68, which is a enterovirus that causes common cold-like symptoms and is usually harmless.
But that link is no longer clear, Ayers said.
What IS acute flaccid myelitis?
AFM is a rare but serious condition that affects the nervous system, specifically the spinal cord, which can cause the muscles and reflexes in the body not to work normally. This type of condition is not new, according to the CDC. Anyone can get AFM or neurological conditions like it, and there are different possible causes, such as viruses, toxins, and genetic disorders.
Most patients will have sudden onset of limb weakness and loss of muscle tone and reflexes. In addition to the limb weakness, some people will experience:
- facial droop/weakness,
- difficulty moving the eyes,
- drooping eyelids, or
- difficulty with swallowing or slurred speech.
The CDC also states,
Numbness or tingling is rare in patients with AFM, though some patients have pain in their arms or legs. Some patients with AFM may be unable to pass urine. The most severe symptom of AFM is respiratory failure that can happen when the muscles involved with breathing become weak. This can require urgent ventilator support (breathing machines).
According to WebMD, the key symptom is the sudden onset of weakness in the arms and legs, which can be present in several limbs or a single one. Stiffness in the neck can also be present.
Is AFM on the rise?
It is hard to say, because the illness can be confused with similar ailments – making diagnosis tricky – and cases are not consistently tracked.
While the CDC did not start tracking cases of AFM until 2014, the condition was known before then.
According to a study published in The JAMA Network Journals in December 2015, there were nearly 60 cases of AFM identified in California from 2012-2015, with most patients being children and young adults.
The California Department of Public Health (CDPH) has maintained a passive surveillance program for potentially infectious undiagnosed neurological conditions since 1998, the study reports. In the first 14 years of the program’s existence, the CDPH did not receive any reports of AFM.
In the fall 2012, the CDPH received 3 separate reports of acute flaccid paralysis cases with evidence of spinal motor neuron injury. Between then and July 2015, 59 cases were identified. The cause of those cases remains unknown.
From August to December 2014, the CDC confirmed 120 cases of AFM in 34 states. In 205, the confirmed case number was 21 in 16 states, and in 2016, 138 cases were confirmed in 37 states.
Because CDC collection of case information only began in 2014 and is voluntary in most states, it is hard to identify trends.
In addition, the CDC does not report which states have had cases:
To protect patient confidentiality, CDC is not specifying the states with confirmed AFM cases. We defer to the states to release this information as they choose.
There’s something else the CDC is not reporting: the number of deaths linked with the condition. Perhaps there haven’t been any deaths attributed to AFM, but considering that tracking is severely lacking, how does anyone really know?
At least one child who was “tentatively diagnosed” with AFM died. Six-year-old Jonathan Daniel Ramirez woke up with a fever on October 12, 2016. Despite the efforts of 30 doctors caring for him at Seattle Children’s Hospital, Daniel died on October 30. He was one of nine children diagnosed with the condition in Washington state during that period.
However, on November 4, 2016, The Seattle Times reported:
The cause of the Oct. 31 death of Jonathan Daniel Ramirez Porter, known as Daniel, is still under investigation, but officials with the Centers for Disease Control and Prevention (CDC) definitely ruled out AFM, a neurological illness that causes limb weakness and specific types of lesions on the spinal cord.
“He is absolutely not AFM,” said Dr. Jim Owens, a pediatric neurologist at Seattle Children’s.
And, there is another twist to Daniel’s story:
The boy’s grandmother, Mitzie De Guzman, said Daniel’s family suspects he may have had a reaction to multiple vaccines required for school admission, plus a flu shot, given Sept. 28, more than two weeks before the child fell ill on Oct. 15. He was admitted later to Seattle Children’s and originally included in the cluster of suspected AFM cases.
“Hospital officials said ‘No, no, no,’ ” De Guzman said.
The family has a Facebook page, Praying For Daniel Ramirez, in honor of their late son. It is updated regularly, and according to a November 2, 2016 comment, Daniel had a flu shot about two weeks prior to being admitted to the hospital.
In the following video, Daniel’s parents share their story:
Did Daniel actually have AFM? If so, could it have been caused by one of the vaccines he’d recently received? Or did he have some other vaccine reaction, or was it a viral illness that killed him?
Myelitis and related disorders have long been linked to vaccination – but they also can be caused by viruses, bacterial infections, non-infectious inflammatory conditions, and autoimmune conditions.
The CDC and FDA co-sponsor a national vaccine safety surveillance program called Vaccine Adverse Event Reporting System (VAERS). It serves to collect information about adverse events (possible side effects) that occur after the administration of vaccines licensed for use in the United States. People can report reactions that may be related to vaccinations there, and the data is open and available for anyone to access.
If a case makes it to “vaccine court”and an award is granted to a family, the money comes from the National Vaccine Injury Compensation Program (VICP). As of April 1, 2017, that program has paid out approximately $3.6 billion since its inception in 1988. It is important to understand that most claims are rejected, and the burden of proof is on the victim in this special court.
A search of the VAERS system revealed 1,199 reported events with myelitis, myelitis transverse, encephalitis, and encephalomyelitis as symptoms.
Acute flaccid myelitis is a variant or sub-type of transverse myelitis, which is a condition recognized by the vaccine court. At least one multi-analysis found that in rare cases, vaccines may trigger the condition.
An analysis titled Vaccines and the U.S. Mystery of Acute Flaccid Myelitis was published in The BMJ on January 30, 2015. The following is an excerpt from that article:
It is taboo to suggest a role for vaccines, but some old-timers remember “provocation poliomyelitis” or “provocation paralysis.” This is paralytic polio following intramuscular injections, typically with vaccines. PP was most convincingly documented by Austin Bradford Hill and J. Knowelden during the 1949 British polio epidemic when the risk of paralytic polio was increased 20-fold among children who had received the DPT injection (BMJ 2:1–July 1, 1950). Similar observations were made by Greenberg and colleagues in New York City; their literature review cited suspected cases as far back as 1921 (Am J Public Health 42:142–Feb.1952). I first became aware of PP 10 years ago while browsing through “Krugman’s Infectious Disease of Children” (page 128 of the 2004 edition).
AFM may result from a direct virus attack on the spinal cord, or by an immune attack triggered by a virus, or by something else. If a polio-like virus is circulating in the U.S., the possibility of its provocation by one or more vaccines has to be considered.
There is no specific treatment for acute flaccid myelitis, but a doctor who specializes in treating brain and spinal cord illnesses (neurologist) may recommend certain interventions on a case-by-case basis, says the CDC. Treatment plans might include physical and occupational therapy for limb problems.
If you notice any symptoms of AFM, seek medical care as soon as possible.
Because an exact cause of the condition is not known, it is hard to say what to do to prevent it. Hand washing and cleaning household surfaces may help, because those measures reduce risk of viral transmission.
You can protect yourself and your family from mosquito-borne viruses such as West Nile virus – a known cause of acute flaccid myelitis – by using mosquito repellent and staying indoors at dusk and dawn. Remove standing or stagnant water from nearby property to minimize the number of mosquitoes.
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Contributed by Lily Dane of The Daily Sheeple.
Lily Dane is a staff writer for The Daily Sheeple. Her goal is to help people to “Wake the Flock Up!”