Polio like "AFM" illness is spreading among children

[Not dead yet!]

Saw this in the news today! Wow. More mutation of the same or similar disease as polio and ME/CFS? Is this another excuse to avoid attention on the adults with ME/CFS? I'm not sure how to feel. I think it's good they are warning parents, but I think that once again, they're providing only limited information to the public.

[article=https://www.cbsnews.com/news/symptoms-of-mysterious-polio-like-illness-accute-flaccid-myelitis-parents-should-watch-out-for/]Federal health officials have issued an unusual warning about a growing number of cases of a polio-like illness called acute flaccid myelitis, also known as AFM. The Centers for Disease Control and Prevention announced Tuesday that 62 cases have been confirmed in 22 states in recent weeks. Ninety percent of those affected are children.[/article]

[article]"Many times it can start with what looks like a respiratory illness, a little bit of a fever," Narula said. "The hallmark is sudden onset of weakness in the arms or the legs. Children can also have trouble swallowing, trouble with their speech, facial droop, trouble with their eye muscles."

The scariest and most severe symptom is when the disease affects the diaphragm, the muscle that helps us breathe.

"That's when children can really deteriorate and end up on a ventilator," Narula explains.[/article]

CDC is recommending vaccinating, washing hands, etc! Without any idea of what's causing it. How can they be so heartless? It's like saying "we want more kids to get sick so we have more data points. " Giving a warning is one thing, but suggesting ineffective prevention is quackery. They should admit that they don't know if any preventative measures will be effective until they know what the disease agent is.

 

[Vaporization]

All the uncertainties are frustrating for parents like Jenna Shumpert, whose son Hunter came down with AFM when he was just 15 months old. He suffered paralysis and had to be put on a ventilator.
"Nobody really knows treatment protocols, they don't know prognosis, and they can't really give parents an answer as to where this is coming from," she said.

 

[Forebearance]

Isn't this illness shocking? The poor children!
It's creepy how similar it is to ME/CFS.

CNN said today that it is being caused by an enterovirus that most people experience as a mild cold. Except for those kids who get it advancing into their spinal columns.

So I guess the prevention advice the CDC is giving is the same as for preventing colds.

 

[Hip]

There is a big difference though between the enterovirus D68 linked to this childhood polio-like paralysis conditions (acute flaccid myelitis), and the enteroviruses linked to ME/CFS.


Unlike the enteroviruses linked to ME/CFS (coxsackievirus B and echovirus), enterovirus D68 does not appear to cause chronic infections, so all the damage to the nerves is done during the acute infection, just like it is with poliovirus. So this is hit and run damage which enterovirus D68 causes before disappearing (or more accurately, before being eliminated from the body by the immune response).

Whereas with ME/CFS, it's more likely that the ongoing infection with enterovirus causes the symptoms. Evidence for this comes from the interferon alpha therapy studies on enterovirus ME/CFS, which observed dramatic improvements in ME/CFS from this therapy, thus suggesting that ME/CFS is not caused by some initial hit and run damage, but by ongoing infection.

It's only enteroviruses from the enterovirus B species (which includes coxsackievirus B and echovirus) that are known to cause chronic infections. Whereas enterovirus A, C and D species are only capable of acute infections. Enterovirus D68 is a serotype from the enterovirus D species.

 

[Not dead yet!]

<p>

There is a big difference though between the enterovirus D68 linked to this childhood polio-like paralysis conditions (acute flaccid myelitis), and the enteroviruses linked to ME/CFS.</p><p>&nbsp;</p><p>&nbsp;</p><p>Unlike the enteroviruses linked to ME/CFS (coxsackievirus B and echovirus), enterovirus D68 does not appear to cause chronic infections, so all the damage to the nerves is done during the acute infection, just like it is with poliovirus. So this is hit and run damage which enterovirus D68 causes before disappearing (or more accurately, before being eliminated from the body by the immune response).</p><p>&nbsp;</p><p>Whereas with ME/CFS, it&#039;s more likely that the ongoing infection with enterovirus causes the symptoms. Evidence for this comes from the <a href="https://me-pedia.org/wiki/Interferon" target="_blank" class="externalLink ProxyLink" data-proxy-href="https://me-pedia.org/wiki/Interferon" rel="nofollow">interferon alpha therapy studies on enterovirus ME/CFS</a>, which observed dramatic improvements in ME/CFS from this therapy, thus suggesting that ME/CFS is not caused by some initial hit and run damage, but by ongoing infection.</p><p>&nbsp;</p><p>It&#039;s only enteroviruses from the enterovirus B species (which includes coxsackievirus B and echovirus) that are known to cause chronic infections. Whereas enterovirus A, C and D species are only capable of acute infections. Enterovirus D68 is a serotype from the enterovirus D species.

Has E-D68 been identified as the cause of AFM? Not sure I followed all of that.

Not sure if this has been identified as the cause of the current AFM epidemic which has paralysis as an endpoint, and failure of the diaphragm as the current severe early hallmark. https://www.cdc.gov/non-polio-enterovirus/about/ev-d68.html

 

[Hip]

I think I followed most of that, but what's Enterovirus D68? Do you mean the AFM illness? Because I wasn't aware that the virus had been identified, even by a number.

Enterovirus D68 (also written as enterovirus 68) is the chief suspect for identity of the virus which causes acute flaccid myelitis (AFM), but I understand this has not been proven definitively as yet.


Under the new classification system, all the enterovirus viruses are divided into different classes named A, B, C, D (and there are also enteroviruses E to L but these do not infect humans).

The enteroviruses linked to ME/CFS, coxsackievirus B and echovirus, have been placed into the enterovirus B set. It's the enterovirus B set of viruses that can cause chronic infections.

 

[Not dead yet!]

Enterovirus D68 (also written as enterovirus 68) is the chief suspect for identity of the virus which causes acute flaccid myelitis (AFM), but I understand this has not been proven definitively as yet.


Under the new classification system, all the enterovirus viruses are divided into different classes named A, B, C, D (and there are also enteroviruses E to L but these do not infect humans).

The enteroviruses linked to ME/CFS, coxsackievirus B and echovirus, have been placed into the enterovirus B set. It's the enterovirus B set of viruses that can cause chronic infections.

Can you tell which cocksackie virus you've been tested for? I may have to dig that up. I've been tested for it and it was negative. Haven't heard of the echo one. Thanks for that!

 

[Hip]

Dr Chia uses the ARUP Lab antibody micro-neutralization tests for coxsackievirus B and echovirus. Other tests are usually not sensitive enough. I have high titers to coxsackievirus B4.

 

[Not dead yet!]

Dr Chia uses the ARUP Lab antibody micro-neutralization tests for coxsackievirus B and echovirus. Other tests are usually not sensitive enough. I have high titers to coxsackievirus B4.

Thanks! Anytestnow doesn't appear to test for these and I haven't found a hit for Requestatest (ie. where Labcorp subcontracts its direct to consumer testing). So I printed out the specific tests from the ARUP website and will take it to my MD.

I also found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2134265/?page=1

In 1983! So they were already debating how to test for viruses. I'd like to know how that muddle turned into a regulatory policy of not testing people. The pericarditis thing is particularly apt for my health. Also the pleural pain part hits a symptom with no explanation in my body. I'm actually very annoyed that Anytestnow claims to not do any contagious disease tests and yet tests for EBV and HSV.

 

[Hip]

Anytestnow doesn't appear to test for these and I haven't found a hit for Requestatest (ie. where Labcorp subcontracts its direct to consumer testing).

I am in the UK, and am not that familiar with the US system, but I know that when patients on the ME/CFS forums who have requested these ARUP Lab tests through either LabCorp or Quest, a lot of the time their blood sample is not sent to ARUP to testing, and instead LabCorp or Quest do the test in house, which is then the wrong test, and is not sensitive enough.

So if you do order these ARUP tests through LabCorp or Quest, triple check that they are being sent to ARUP. And when you get the results, ensure that it says ARUP on the test results page.

I think the ARUP coxsackievirus B test has LabCorp code 816869, but I am not sure of the LabCorp code for ARUP echovirus test. Coxsackievirus B is a more common virus in ME/CFS than echovirus.

 

[Not dead yet!]

I am in the UK, and am not that familiar with the US system, but I know that when patients on the ME/CFS forums who have requested these ARUP Lab tests through either LabCorp or Quest, a lot of the time their blood sample is not sent to ARUP to testing, and instead LabCorp or Quest do the test in house, which is then the wrong test, and is not sensitive enough.

So if you do order these ARUP tests through LabCorp or Quest, triple check that they are being sent to ARUP. And when you get the results, ensure that it says ARUP on the test results page.

I think the ARUP coxsackievirus B test has LabCorp code 816869, but I am not sure of the LabCorp code for ARUP echovirus test. Coxsackievirus B is a more common virus in ME/CFS than echovirus.

Thanks The nice thing about my MD is that he's been practicing for decades. He finished med school around 1975 so he could possibly remember this. I also have a referral to an infectious disease specialist. Hoping that won't be a big disappointment. There's a clinic within a few hours drive for me that does alternative health specifically for CFS and if the official route doesn't work out, I may go there.

It seems so suspicious to me that we have the "National Heart, Lung and Blood Institute" and a large percentage of the problems there could be explained by viruses. But they keep acting like diet and exercise will fix it. Yet the literature says, they've been arguing for decades about how best to test and how best to interpret those tests, for those viruses that affect the Heart and Lungs. And now we're looking for an inflammatory fingerprint for ME/CFS. Is it really so hard to test for a virus? Is it so hard to plan how to handle a possible infection? Is it so hard to show that if you do that, people recover and if you don't, they don't? I think they protest too much when they say "Ohhhh it's complex, no incontrovertible evidence, no good answers." I'm willing to seek results, not to sacrifice myself on the altar of scientific quality of evidence. AFAIK I get one life to live and they've been debating since I was age 10ish.

OK, enough soapbox for now. Thanks for the tips on how to be tested though!