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Why is nobody talking about this Enterovirus study?

Moof

Senior Member
Messages
778
Location
UK
I just don't know anyone who's been affected by AFM or AFP. It's a terrible condition – it sounds very like polio before the vaccines were developed – but fortunately it's still very rare.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
I just don't know anyone who's been affected by AFM or AFP. It's a terrible condition – it sounds very like polio before the vaccines were developed – but fortunately it's still very rare.

No it doesn't. Polio cripples most who get the virus. EVs don't, only 1%.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
@bread, thanks for posting this important enterovirus study.

Ian Lipkin at Columbia University presented his AFM research at the NIH's ME/CFS Conference in April 2019.
He seems to be using a different testing technology which he'll be using to test ME/CFS patients.

There's a thread for more information about it here:

https://forums.phoenixrising.me/thr...to-acute-flaccid-myelitis.77515/#post-2230287

@jpcv @Hip
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
But many experts remained skeptical of the enterovirus hypothesis, instead proposing that AFM is an autoimmune disorder or is caused by some other, as-yet-undiscovered virus. These EV skeptics argued that that the evidence linking the virus to AFM was circumstantial, because the virus could not be found in 98 percent of AFM patients who had their spinal fluid tested. They maintained that until there was ample evidence of the virus invading the human nervous system, the link between EVs and AFM remained unproven.

But we already have a name for autoimmune AFM: Guillain–Barré syndrome(s) (which is bilateral). Other rarer forms can be due to lesions or infarction in certain parts of the brainstem, cerebellum or spinal cord.

The notable characteristic of the suspected enteroviral cases is that they are unilateral.
 

Hip

Senior Member
Messages
17,874
No it doesn't. Polio cripples most who get the virus. EVs don't, only 1%.

Two mistakes in that statement: First of all, poliovirus is an enterovirus; secondly, paralytic poliomyelitis only occurs in less than 1% of people who get poliovirus infections, as the Wikipedia article will tell you.

It's completely wrong to say that poliovirus cripples most. Most show no symptoms when they catch poliovirus.



But many experts remained skeptical of the enterovirus hypothesis, instead proposing that AFM is an autoimmune disorder or is caused by some other, as-yet-undiscovered virus. These EV skeptics argued that that the evidence linking the virus to AFM was circumstantial, because the virus could not be found in 98 percent of AFM patients who had their spinal fluid tested.

These so-called experts obviously did not pay much attention in class when learning about enterovirus: those who know about enterovirus will tell you that you usually do not find enterovirus in the cerebrospinal fluid during an enterovirus brain infection.

In the case of the well-known enterovirus 71 brain infections, only 5% of the CSF samples are positive, even though there is a raging enterovirus 71 infection in the brain, which is often serious enough to kill children.

Source: State of Knowledge Day 1, Part 2, timecode 9:33
 
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Moof

Senior Member
Messages
778
Location
UK
It's completely wrong to say that poliovirus cripples most.

Yep – that was part of the problem! Most people had no symptoms at all, and in those who did become unwell, it was often so minor that it couldn't easily be distinguished from a cold or a tummy upset.

My cousin still has partial paralysis in one leg because of getting polio when he was seven, but none his siblings had symptoms. I was lucky enough to arrive a few years later, by which time the oral vaccine had become available.

I'm guessing AFM is probably similar. It's very hard even nowadays to track an infection that's completely silent in the vast majority who get it.
 

Hip

Senior Member
Messages
17,874
It would be interesting to submit ME patients to this same diagnostic procedure, the technology seems very reliable.

Yes, that's a good point.

After reading your post, it prompted me to email two researchers connected with this new study, asking them whether it would be feasible to use VirScan on the cerebrospinal fluid of ME/CFS patients to detect enterovirus and herpesvirus infections in ME/CFS patients' brains.
 
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Gemini

Senior Member
Messages
1,176
Location
East Coast USA
it promoted me to email two researchers connected with this new study, asking them whether it would be feasible to use VirScan on the cerebrospinal fluid of ME/CFS patients to detect enterovirus and herpesvirus infections in ME/CFS patients' brains.
It would be great if these researchers used VirScan on ME/CFS samples.

Lipkin will be using VirCapSeq-VERT and SeroChip microarray analysis (Roche) on ME/CFS samples.

It would be useful to compare the ME/CFS findings from both groups-- they were similar in their AFM studies, 70% and 80% respectively.

Lipkin's AFM study is here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6692520

@Hip thanks for reaching out to the researchers.
 

Hip

Senior Member
Messages
17,874
Lipkin will be using VirCapSeq-VERT and SeroChip microarray analysis (Roche) on ME/CFS samples.

I believe VirCapSeq-VERT is an enhanced version of high-throughput sequencing, and Prof Ian Lipkin has said that the latter will not detect enterovirus in blood samples; it would only be effective if used on actual infected tissues samples.

So this does not make it useful for detecting enterovirus brain infections. This is why the VirScan approach looks promising for ME/CFS, as that seems like it might detect brain infections.

Prof Lipkin told me that he does not believe enterovirus can be the cause of ME/CFS, so he does not have much interest in this virus. He still thinks some other undiscovered virus may explain ME/CFS.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
This is what Polio used to look like before vaccination.

No cure exists for the symptoms, but in the 1950s effective vaccines were developed and have been used around the world since then. This allowed some richer countries to eliminate the disease entirely in the 1960s and 70s. But large outbreaks continued around the world and in the 1980s the estimated global number of paralytic cases was over 350,000 per year and the disease was still prevalent in 125 countries

https://ourworldindata.org/polio
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
6/17/1916
New York City Polio Epidemic

Health officials announced a polio epidemic centered in Brooklyn, New York. As was typical with polio outbreaks, infections surfaced in the summer months.
More than 2000 people would die in New York City alone. Across the United States in 1916, polio took the lives of about 6,000 people, leaving thousands more paralyzed.
Summer epidemics would come to be common in this era and would lead to widespread closures of pools, amusements parks, and other places where children gathered.

https://www.historyofvaccines.org/timeline#EVT_100303
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
After reading your post, it promoted me to email two researchers connected with this new study, asking them whether it would be feasible to use VirScan on the cerebrospinal fluid of ME/CFS patients to detect enterovirus and herpesvirus infections in ME/CFS patients' brains.
If/when you hear back from them @Hip I would be very interested to hear their replies. If you post it here, and you remember to, please could you tag me in?
 

Hip

Senior Member
Messages
17,874
If/when you hear back from them @Hip I would be very interested to hear their replies. If you post it here, and you remember to, please could you tag me in?

Will do, Wolfcub.

I do sometimes write to researchers to pass on some info I've read, if I think the info might be of use to their research, or if I think it might get them interested in ME/CFS. About half of them are kind enough to reply to me. So keep my fingers crossed I'll get a response from these guys.
 

Hip

Senior Member
Messages
17,874
That wikipedia article you quoted is talking about mutated strains of polio from live vaccine not the virulent form that people got before vaccination.

Wikipedia is taking about the wild-type poliovirus that used to appear in large infectious outbreaks before the advent of vaccination. The article says that:
Paralytic poliomyelitis occurs in less than 1% of poliovirus infections. Paralytic disease occurs when the virus enters the central nervous system (CNS) and replicates in motor neurons within the spinal cord, brain stem, or motor cortex, resulting in the selective destruction of motor neurons leading to temporary or permanent paralysis. In rare cases, paralytic poliomyelitis leads to respiratory arrest and death.

The amazing thing about poliovirus is that on the one hand it could permanently paralyze or kill you, but most people who caught poliovirus would get symptoms so mild they would not even notice them (asymptomatic infection).

So when people argue that enterovirus it not a likely cause of ME/CFS because most people who catch enterovirus do not experience any obvious clinical disease, I just point to the case of poliovirus, which clearly indicates that a virus can have no adverse effect in some people, yet the same virus can seriously injure or kill others.



There's also an interesting theory that the introduction of the poliovirus vaccine in the 1950s may have been the cause of the dramatic increase in the incidence of ME/CFS decades later in the 1980s. The theory is that because most of us were naturally exposed to poliovirus before the vaccine appeared, and most of us survived poliovirus infection without incident, this exposure to poliovirus toughened our immune systems against enteroviruses in general.

But once we lost that toughening, we became more susceptible to the enteroviruses, and in particular more susceptible to the enteroviruses linked to ME/CFS (namely coxsackievirus B and echovirus).
 
Messages
56
Yes, that's a good point.

After reading your post, it prompted me to email two researchers connected with this new study, asking them whether it would be feasible to use VirScan on the cerebrospinal fluid of ME/CFS patients to detect enterovirus and herpesvirus infections in ME/CFS patients' brains.

Let's crowdfund a study. I'll donate for sure.
 

Daisymay

Senior Member
Messages
754
Wikipedia is taking about the wild-type poliovirus that used to appear in large infectious outbreaks before the advent of vaccination. The article says that:


The amazing thing about poliovirus is that on the one hand it could permanently paralyze or kill you, but most people who caught poliovirus would get symptoms so mild they would not even notice them (asymptomatic infection).

So when people argue that enterovirus it not a likely cause of ME/CFS because most people who catch enterovirus do not experience any obvious clinical disease, I just point to the case of poliovirus, which clearly indicates that a virus can have no adverse effect in some people, yet the same virus can seriously injure or kill others.



There's also an interesting theory that the introduction of the poliovirus vaccine in the 1950s may have been the cause of the dramatic increase in the incidence of ME/CFS decades later in the 1980s. The theory is that because most of us were naturally exposed to poliovirus before the vaccine appeared, and most of us survived poliovirus infection without incident, this exposure to poliovirus toughened our immune systems against enteroviruses in general.

But once we lost that toughening, we became more susceptible to the enteroviruses, and in particular more susceptible to the enteroviruses linked to ME/CFS (namely coxsackievirus B and echovirus).

Hip, do you know of any research which tries to answer why the 1% get symptomatic polio, is there any difference in genetics or whatever?