The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

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Oliver3

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Wishful said:
My connective tissue seems fine, yet I still have ME.
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But how would you know if it's internal connective tissue,
It would be foolish to say that every case of m.e. is from one cause, but I think it's almost universal.
I think the eds is subclinical and there are probably variants we don't know and haven't been able to pin down genetically.
The vascular system is particularly effected.
This is not directed at you but I find it odd that people won't bite the bullet and say this could be a foundational cause.
I think m.e. could likely be induced in most people under duress for long enough, but we don't have that durability. Why.
Naviaux says ecogenic causes , i.e. from the environment cause autism because they stop healing cycles within the human body. But why do they effect autistic people and sensitive people first.


I just think it's a huge reason why many of us are sick. I've never met anyone in my personal experience who didn't have aspects of eds to them and also had m.e.
I've also met many eds patients who present exactly as m.e. patients do.

I just wish there was more emphasis places on this as well as this search for viruses.
It's like there was a dodgy laboratory, very porous, that allowed viruses to escape..would it be the virus, or the fault connective tissue of the building that wee blame.

I just feel it deeply that this almost always starts the cascade. We notice the virus that made us I'll but we didn't notice the build up before the damage broke so to speak
 
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hapl808

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Wishful said:
My connective tissue seems fine, yet I still have ME.
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I also think your version of ME seems somewhat unusual. If I recall, you no longer experience PEM from physical activity? Not sure if you do from mental exertion. This is the difficulty with ME/CFS - I really think it's more likely a bucket of diseases, but we can't really distinguish them because we don't understand almost any of the mechanisms involved.
 
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Wishful

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Oliver3 said:
This is not directed at you but I find it odd that people won't bite the bullet and say this could be a foundational cause.
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I haven't seen any convincing evidence, or even convincing argument that connective tissue is involved with ME. While I can't know for sure that there isn't some connective tissue somewhere in my body that is in an abnormal state, I can't find any evidence that there is any. Also, it pretty clearly fails my "Does it explain abrupt switching from full ME to full non-ME and back again?" test, so it's definitely off my list of possible causes of ME. Furthermore, I'm guessing that there are drugs or supplements that should affect connective tissue growth/repair, but I don't recall a significant number of PWME reporting that those treatments worked on their ME.

Note that I'm not saying that connective tissue disorders can't be a common downstream effect of ME. If ME is due to dysfunction of brain cells, that can affect pretty much any part of the body, including connective tissue growth/repair/maintenance. You might notice a correlation between your observable connective tissue and your other ME symptoms, but that doesn't prove it's a cause rather than an effect. Connective tissue failure could worsen ME, perhaps by activating the immune cells to continually clean up damage, or in the case of spinal problems, send some signals other than cytokines.

I think most of us have some symptom or response that we believe is the root cause of our ME. My observations have convinced me that it's in the brain, and that the glial cells and KYN pathway is involved, but I don't have any way to prove that theory. You observe connective tissue abnormalities, and believe that that's the root cause. Someone else is convinced that if they find just the right FMT, they'll be cured.

I think a lot of the support for viral cause of ME is because it offers an easy solution: do the right RNA test from the right tissues, and you'll find the evil virus, and then you just need the right antiviral treatment to cure ME. My theory is far less attractive, since if correct, the root cause will be very hard to find (digging around in live brains) and harder to find a treatment/cure for (getting the right chemicals to the right brain cells without nasty side-effects). However, as with the "looking for your lost keys under the streetlight" story, looking in the easy spots isn't necessarily the best solution.
 
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Wishful

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Rufous McKinney said:
the Remission Biome folks mention this substance today: (product below is an example)
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"It is not possible to get enough plasmalogens through the diet as they are degraded in the gut."

So, are these softgels supposed to be fired through the skull? Stick them in your ears or up your nose? I'm just guessing that there's no reliable evidence that these softgels result in actual increase in these "critical membrane building materials" in glial cells. Sounds like the usual "Click on "buy it now" and the miracle substance will magically appear in the right cells and make you young and healthy again" scam.
 
sometexan84

sometexan84

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Oliver3 said:
I've never met anyone in my personal experience who didn't have aspects of eds to them and also had m.e.
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I don't have any weird joint or stretchy skin issues. If I said I had extreme fatigue, would say "this is an aspect of EDS"?

It would be foolish to say that every case of m.e. is from one cause
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I agree
 
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sometexan84

sometexan84

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Wishful said:
I think a lot of the support for viral cause of ME is because it offers an easy solution: do the right RNA test from the right tissues, and you'll find the evil virus, and then you just need the right antiviral treatment to cure ME. My theory is far less attractive, since if correct, the root cause will be very hard to find (digging around in live brains) and harder to find a treatment/cure for (getting the right chemicals to the right brain cells without nasty side-effects). However, as with the "looking for your lost keys under the streetlight" story, looking in the easy spots isn't necessarily the best solution.
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Occam's razor
 
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Oliver3

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Wishful said:
I haven't seen any convincing evidence, or even convincing argument that connective tissue is involved with ME. While I can't know for sure that there isn't some connective tissue somewhere in my body that is in an abnormal state, I can't find any evidence that there is any. Also, it pretty clearly fails my "Does it explain abrupt switching from full ME to full non-ME and back again?" test, so it's definitely off my list of possible causes of ME. Furthermore, I'm guessing that there are drugs or supplements that should affect connective tissue growth/repair, but I don't recall a significant number of PWME reporting that those treatments worked on their ME.

Note that I'm not saying that connective tissue disorders can't be a common downstream effect of ME. If ME is due to dysfunction of brain cells, that can affect pretty much any part of the body, including connective tissue growth/repair/maintenance. You might notice a correlation between your observable connective tissue and your other ME symptoms, but that doesn't prove it's a cause rather than an effect. Connective tissue failure could worsen ME, perhaps by activating the immune cells to continually clean up damage, or in the case of spinal problems, send some signals other than cytokines.

I think most of us have some symptom or response that we believe is the root cause of our ME. My observations have convinced me that it's in the brain, and that the glial cells and KYN pathway is involved, but I don't have any way to prove that theory. You observe connective tissue abnormalities, and believe that that's the root cause. Someone else is convinced that if they find just the right FMT, they'll be cured.

I think a lot of the support for viral cause of ME is because it offers an easy solution: do the right RNA test from the right tissues, and you'll find the evil virus, and then you just need the right antiviral treatment to cure ME. My theory is far less attractive, since if correct, the root cause will be very hard to find (digging around in live brains) and harder to find a treatment/cure for (getting the right chemicals to the right brain cells without nasty side-effects). However, as with the "looking for your lost keys under the streetlight" story, looking in the easy spots isn't necessarily the best solution.
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Connective tissue is involved in brain inflammation.
There's certainly lots of convincing data that connective tissue is massively involved in m.e. mcas, inflammation, autoimmunity, bone and vascular strength and integrity, succesptibility to viruses and inflammation.

Again, I'm not saying every case has these roots. But I'm saying there's a massive cohort of people in this category. And connective tissue is really not an easy fix. That's why I want research to start like yesterday.

You don't have to have stretchy skin etc to have eds. Jen brea was deemed not to have EDS til they found out the ligaments in her neck were causing the brain injury etc .
It's still not understood as a concept by anyone really. Just a bunch of largely loose fitting symptoms, especially with heds.

M.e. fibro, other connective tissue problems run in families. Ron Davies has EDS.
So does Whitney.

Everything we're made of is tissue...how can it not be ground zero
 
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Oliver3

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Extreme fatigue is definitely a main symptom of eds.
Breast cancer is 9 diseases I think. So I know there gonna be different versions of illness.
But we need to look at tissue and how that allows inflammation, autoimmunity etc.
We are different from your average person .
That's my belief anyway. I didn't enjoy coming to that conclusion.
 
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Wishful

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"People with persistent fatigue often describe it as a total exhaustion of every muscle in their body and/or ‘brain fog’ i.e., problems with concentration, thinking, and memory."

I wonder whether that's truly fatigue (which science still hasn't defined clearly) or pain due to abnormal connective tissue that is telling the brain to "stop moving and rest". Since the brain probably doesn't have a "your connective tissue is stretching too much" communication channel, it could use the "exhausted muscle" channel instead to achieve the same goal. Humans do misperceive body signals.
 
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Oliver3

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Wishful said:
"People with persistent fatigue often describe it as a total exhaustion of every muscle in their body and/or ‘brain fog’ i.e., problems with concentration, thinking, and memory."

I wonder whether that's truly fatigue (which science still hasn't defined clearly) or pain due to abnormal connective tissue that is telling the brain to "stop moving and rest". Since the brain probably doesn't have a "your connective tissue is stretching too much" communication channel, it could use the "exhausted muscle" channel instead to achieve the same goal. Humans do misperceive body signals.
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No this is about energy loss in the system.
In ehlers danlos , your muscles are weaker it's not perception. They're not as strong.
It reminds me of the handgrip test to look at longevity.
They're more prone to mitochobdria l dysfunction, more prone to not receiving adequate amounts of oxygen to vascular branches, are sensitifs, people with autism, Alzheimer's, heart disease. People with autism are very prone to hyperactivity in the brain caused by inflammation, so are eds patients and m.e. patients. They're are also prone to reduced blood flow to the brain and dysautonomia scientists are seeing the link between autism and EDS.

Honestly, there is a gathering tome of data that all these diseases have connective tissue problems.

I mean that ehlers danlos talk...you could swap the title and all those headers are what we see in m.e. to ignore that kind of signal would be nuts.

Again, I'm not saying everyone has EDS but I think tissue type is related to your ability to fight infection, autoimmunity, mast cell activation etc and we see these issues in fibro, lymes, m.e. EDS.
The fact these diseases run in families very often says to me that this is not a virus at heart but a genetic flaw that needs treating
 
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Oliver3

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sometexan84 said:
I don't have any weird joint or stretchy skin issues. If I said I had extreme fatigue, would say "this is an aspect of EDS"?



I agree
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It's definitely " a thing". Stretch skin is a bit of a cliche for eds. I think it can be subclinical and / or not a recognized form.
sometexan84 said:
I don't have any weird joint or stretchy skin issues. If I said I had extreme fatigue, would say "this is an aspect of EDS"?



I agree
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https://www.cnn.com/2022/12/24/heal...s-syndrome-health-hnk-spc-dst-intl/index.html

An easy read....look at all the cross over issues.
There are loads of studies around this if you want me to post.

Connective tissue problems can be anywhere. As it mentions in the article, say it's just in your stomach, you may develop gastoparesis, like Whitney.

Check out the RCCCX theory. I find it convincing. But regardless of that, there is lots of recent literature linking eds to all these similar diseases, fibro etc.

I just want to study the ground zero..why don't we deal with viruses well. Why does Epstein barr reactivate. Why are we sensitive and stressed easily etc.
Well eds is a way that can explain all of that
 
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Wishful

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Oliver3 said:
I just want to study the ground zero..why don't we deal with viruses well.
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Actually, quite a few PWME seem to deal with viruses better than average. I've only had a few viral infections in my 20+ years of ME, and my immune systems tend to conquer them in a few days. For me, a typical cold is a few sneezes and a hint of congestion for a day or two. My recent flu lasted 13 days, but maybe the typical response for that specific virus is far longer/worse. I still get cold sores occasionally (maybe once a year?), but that's no different from before ME. So no, I don't think ME's core dysfunction necessarily results in worse viral combat.
 
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Wishful

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I skimmed the ncbi paper. I didn't see anything clearly showing that connective tissue abnormalities were directly causing the neurological symptoms. I can easily accept that neurological abnormalities can cause connective tissue abnormalities. I assume that the brain and nerves are involved in the maintenance of connective tissue (sensing strain on tendons, altering hormone production to correct that), so if there's an observable problem with connective tissue, it's not all that simple to figure out where the root dysfunction is.

The paper suggested that pain in ME and FM might be explained by abnormal connective tissue. That makes sense, but my ME pain was pretty clearly neurological in origin, and effectively treated by LDN, which was more effective when taken sublingually, suggesting that its effects were neurological rather than physical.


Oliver3 said:
I think searching for viruses endlessly is a fools errand
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I agree with that.
 
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Oliver3

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Wishful said:
Actually, quite a few PWME seem to deal with viruses better than average. I've only had a few viral infections in my 20+ years of ME, and my immune systems tend to conquer them in a few days. For me, a typical cold is a few sneezes and a hint of congestion for a day or two. My recent flu lasted 13 days, but maybe the typical response for that specific virus is far longer/worse. I still get cold sores occasionally (maybe once a year?), but that's no different from before ME. So no, I don't think ME's core dysfunction necessarily results in worse viral combat.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6100124/
 
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Oliver3

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Wishful said:
I skimmed the ncbi paper. I didn't see anything clearly showing that connective tissue abnormalities were directly causing the neurological symptoms. I can easily accept that neurological abnormalities can cause connective tissue abnormalities. I assume that the brain and nerves are involved in the maintenance of connective tissue (sensing strain on tendons, altering hormone production to correct that), so if there's an observable problem with connective tissue, it's not all that simple to figure out where the root dysfunction is.

The paper suggested that pain in ME and FM might be explained by abnormal connective tissue. That makes sense, but my ME pain was pretty clearly neurological in origin, and effectively treated by LDN, which was more effective when taken sublingually, suggesting that its effects were neurological rather than physical.



I agree with that.
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Did you see the event from the ehlers danlos society I referenced.. if you just retitled that the m.e. association event, non of the subheadings would be out of place.

Your brain is made out of connective tissue. It's not just fascia. It's the building blocks of life
Eds has an overlap with autism.
I can reference that if you want
We don't deal well with viruses. We over conpensate because of lack in the immune system.
But Epstein barr reactivates the whole time.

Heavy metals collect more easily in eds patients. The brain is where they often end up. Hence why we're low in selenium cos it's selenium and aluminum fight for the same receptors. That is gonna cause hyperactivity, glial cell activation, brain damage. But why are eds, m.e. people etc more susceptible to heavy metals. Connective tissue.
 
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