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CFS = Immune Dysfunction?

Seven7

Seven
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3,444
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USA
There is also progression of disease. My symptoms today are different than before, and there even though I do get better, the complications get more serious as time passes by.
 

Hip

Senior Member
Messages
17,824
I was not viral trigger (Mine was gradual) and I have immune dysfunction, I just want to put the myth to rest. What do you all think???

Just because you had a gradual onset of ME/CFS, this does not mean you did not have a viral trigger.

Some people develop ME/CFS within days of a viral infection; other people develop ME/CFS more slowly after a viral infection, over a period of years.

You can have a short flu-like illness, a gastrointestinal sickness, or a bad sore throat when you first catch a ME/CFS-associated virus, but then seemingly recover after a few weeks. But the virus is still in your body, and may slowly cause more and more damage, such that ME/CFS eventually appears.

Chia has performed a longitudinal study, which followed people who had an acute enterovirus infection; this study showed that a certain percentage of these people will develop ME/CFS not immediately after catching the infection, but some time later. Ref: here.
 
Messages
445
Location
Georgia
So I was having a conversation with a member and this member was under the impression that because his CFS was not trigger by Virus, the member think he did not have Immune dysfunction.

So I have a question. Doesn't having CFS means that no matter the trigger you will see some deregulation on the cytokines, Viral reactivation are possible and so on???

I was not viral trigger (Mine was gradual) and I have immune dysfunction, I just want to put the myth to rest. What do you all think???

7

I'm afraid you are right, Inester7. Not everybody develops their illness through a viral illness. In fact, probably less than half actually do. I've been around enough patients to know that triggers are extremely diverse: including car accidents, emotional stress, bowel parasites, environmental toxic smells, and on and on. In fact, many are like me and you: we never had a trigger. In fact, I had symptoms as a child. But we don't have dramatic tales to tell doctors, so our case histories are likely to be ignored. And under-represented in the medical literature. Our current docs have a fetish for pathogen "bug hunting". It does raise the important logical point: if there are so many varied causes for an onset of an illness, then maybe it is a weakness in the patient, and not a pathogen.
 

heapsreal

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10,089
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I think its more related to immune system then a certain bug, as its the immune dysfunction that allows them in, which is why some people respond to certain treatments treating pathogens and some dont, u have to be treating the right pathogen which is why i think subsets help. Dare i say it even the herpes/antivral sub group that some people dont believe, even though many have been helped with treatment.
 

Hip

Senior Member
Messages
17,824
Our current docs have a fetish for pathogen "bug hunting". It does raise the important logical point: if there are so many varied causes for an onset of an illness, then maybe it is a weakness in the patient, and not a pathogen.

I wish that were the case. But unfortunately very few doctors and medical researchers are aware of the links between microbes and chronic diseases, in spite of the fact that many common chronic diseases are linked to microbial infections.

I suspect most doctors and medical researchers still hold the psychosomatic model for ME/CFS.
 

Hip

Senior Member
Messages
17,824
I think its more related to immune system then a certain bug, as its the immune dysfunction that allows them in, which is why some people respond to certain treatments treating pathogens and some dont, u have to be treating the right pathogen which is why i think subsets help. Dare i say it even the herpes/antivral sub group that some people dont believe, even though many have been helped with treatment.

But the question is, what causes immune dysfunction in the first place?

Most microbes are able to directly cause immune dysfunction, since virtually all microbes deploy what is called immune evasion. Immune evasion is "throwing a spanner into the workings of the immune system", so as to screw it up, and thereby stop the immune system from killing the microbe.

If there is some immune dysfunction in an individual, this immune dysfunction may well be due to the immune evasion strategies employed by the microbes living within that person.

This immune evasion activity of microbes is similar to what happens in warfare: you don't just fight the enemy, you also do things to screw up the enemy's operations and logistics, which then weakens their fight.

This is what microbes do to us: they deliberately mess up or misdirect our immune systems to weaken our fight. That is what immune evasion is.

I'll give you one example of a cunning immune evasion tactic used by a microbe: Epstein-Barr virus actually has the ability to make a fake version of the human cytokine IL-10. The function of IL-10 in humans is to switch off the antiviral Th1 response, and instead switch on the antibacterial Th2 response. So this is why EBV makes this fake IL-10, because when EBV secretes IL10 it causes the human immune system to turn off its antiviral response, and this then stops EBV from being attacked by the immune system. Ref: here.

Making fake IL-10 is a brilliant strategy on behalf of EBV, but of course for us, it means we now have immune dysfunction, caused by EBV, and this immune dysfunction may make us unable to properly attack viruses in general.

I have long suspected that such immune evasion tactics may be at the heart of the immune dysfunction found in ME/CFS.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
How can we make these claims with such a lousy foundation to build upon, we do not have biomakers etc..So someone with a diagnosis of CFS could really have something else that is missed, not sure how often this would happen, but.

GG
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
But the question is, what causes immune dysfunction in the first place?

Most microbes are able to directly cause immune dysfunction, since virtually all microbes deploy what is called immune evasion. Immune evasion is "throwing a spanner into the workings of the immune system", so as to screw it up, and thereby stop the immune system from killing the microbe.

If there is some immune dysfunction in an individual, this immune dysfunction may well be due to the immune evasion strategies employed by the microbes living within that person.

This immune evasion activity of microbes is similar to what happens in warfare: you don't just fight the enemy, you also do things to screw up the enemy's operations and logistics, which then weakens their fight.

This is what microbes do to us: they deliberately mess up or misdirect our immune systems to weaken our fight. That is what immune evasion is.

I'll give you one example of a cunning immune evasion tactic used by a microbe: Epstein-Barr virus actually has the ability to make a fake version of the human cytokine IL-10. The function of IL-10 in humans is to switch off the antiviral Th1 response, and instead switch on the antibacterial Th2 response. So this is why EBV makes this fake IL-10, because when EBV secretes IL10 it causes the human immune system to turn off its antiviral response, and this then stops EBV from being attacked by the immune system. Ref: here.

Making fake IL-10 is a brilliant strategy on behalf of EBV, but of course for us, it means we now have immune dysfunction, caused by EBV, and this immune dysfunction may make us unable to properly attack viruses in general.

I have long suspected that such immune evasion tactics may be at the heart of the immune dysfunction found in ME/CFS.

I remember reading about how ebv has a way of lowering our natural antiviral interferon, probably by the mechanisms u mentioned. The interesting thing about lower interferon levels is that interferon increases nk function, so maybe this is why many of us have low nk function. Drugs like ampligen, immunovir etc are actually interferon inducers, which is how it improves nk function. They arent always a cure (maybe the infections are too embedded) but help many and maybe in combo with other infectious treatments they improve outcomes.

I suppose if the infection was causing the immune supression and say its ebv, then treating ebv with antivirals should increase immune function. I guess if immune function doesnt improve with antivirals then maybe the immune dysfunction came first??

We just dont know, treat what we find and treat the dysfunctions is all we got. I suppose its like plugging holes in a sinking ship but if u dont try to plug the holes it sinks before it gets to the mainland??

cheers!!!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia

Hip

Senior Member
Messages
17,824
I suppose if the infection was causing the immune supression and say its ebv, then treating ebv with antivirals should increase immune function. I guess if immune function doesnt improve with antivirals then maybe the immune dysfunction came first??

Or you may be using the wrong antivirals, as it is not just EBV that engages in this despicable activity of immune evasion. Coxsackievirus B, for example, also has a very effective way to evade the immune system, as follows:

When Coxsackie B virus infects a human cell, the first thing thsi virus does is remove the crucial MHC 1 molecule from the surface of that cell. This MHC 1 molecule is a vital part of a cell: it is used for signaling to the immune system that the cell has become infected.

But since coxsackievirus B removes all the vital MHC 1 from the cells it infects, these virally infected cells can then no longer signal to the immune system, and so these cells in effect actually become invisible to the immune system's surveillance, particularly the CD8 T cells. Ref: here.

So you may try taking medications that boost your CD8 T cell responses, but is will not really help, as coxsackievirus B infected cells are invisible to these CD8 T cells.

With all these immune evasion activities going on, arising from all the different microbes we have in our bodies, it is a wonder that our immune systems actually work at all.

If it were not for these immune evasion activities, I suspect that our immune systems would be able to easily eliminate all the nasty pathogens from out bodies. I think these pathogens only manage to survive in our bodies because of their immune evasion activities, which causes our immune system to malfunction.
 

Hip

Senior Member
Messages
17,824
Hip have u found any interesting research on NK function and coxsachie/enteroviruses?

Not really. But I am not sure whether low natural killer cell function is a major problem in ME/CFS (even though low NK function is certainly often found in ME/CFS patients).

I have experimented with taking a lot of potent NK function boosters simultaneously, but I did not see much improvement in symptoms.

Supplements that boost NK activity include: MGN3 (extract of arabinoxylan from rice bran), AHCC (active hexose correlated compound), transfer factor, B12 methylcobalamin, echinacea, Panax ginseng, IP6 (inositol hexaphosphate), larch arabinogalactans, thymus extracts, IGF-1 hormone, low dose naltrexone, zinc, DHEA, glutamine, sulforaphane (broccoli sprout extract), astragalus, aged garlic, cordyceps, shiitake, maitake, MCP (modified citrus pectin), Rhodiola rosea (golden root), mangosteen, spirulina, Gynostemma pentaphyllum (jiaogulan), cat's claw, selenium, vitamin E, quercetin, beta sitosterol, taurine, lycopene, inosine, neem, siberian ginseng, alfalfa, noni, aloe vera.

Some of these supplements are very potent boosters of NK function. I took around 10 of the most potent above NK function boosters together, but I found the benefits minimal. Though of course, these supplements might be more beneficial for other ME/CFS patients. You never know until you try.
 
Messages
445
Location
Georgia
How can we make these claims with such a lousy foundation to build upon, we do not have biomakers etc..So someone with a diagnosis of CFS could really have something else that is missed, not sure how often this would happen, but.

GG,
I agree with you.
Most of the suspected pathogens would leave footprints or traces of their damage. Our medical technology could find the pathogen or at least the work it has done.
The alternative is that there is a brand new bug out there that has inherently superior qualities in stealth and potency. The nature of scientific enquiry is that such new findings rarely happen.
In fact, Ockham's Razor dictates it is usually something simple, easily explained, that turns out to be the cause.
My suspiciion, hence, is that it is an issue autoimmunity and not a pathogen.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Not really. But I am not sure whether low natural killer cell function is a major problem in ME/CFS (even though low NK function is certainly often found in ME/CFS patients).

I have experimented with taking a lot of potent NK function boosters simultaneously, but I did not see much improvement in symptoms.

Supplements that boost NK activity include: MGN3 (extract of arabinoxylan from rice bran), AHCC (active hexose correlated compound), transfer factor, B12 methylcobalamin, echinacea, Panax ginseng, IP6 (inositol hexaphosphate), larch arabinogalactans, thymus extracts, IGF-1 hormone, low dose naltrexone, zinc, DHEA, glutamine, sulforaphane (broccoli sprout extract), astragalus, aged garlic, cordyceps, shiitake, maitake, MCP (modified citrus pectin), Rhodiola rosea (golden root), mangosteen, spirulina, Gynostemma pentaphyllum (jiaogulan), cat's claw, selenium, vitamin E, quercetin, beta sitosterol, taurine, lycopene, inosine, neem, siberian ginseng, alfalfa, noni, aloe vera.

Some of these supplements are very potent boosters of NK function. I took around 10 of the most potent above NK function boosters together, but I found the benefits minimal. Though of course, these supplements might be beneficial for someone else.

I wonder if nk dysfunction is more of just a sign of a crappy immune system as many have been able to increase nk function with certain substances and some improve but no recovery which one would think would happen if it was the core issue. But i will try to increase nk function as it does have a job to do in the immune system.
 

Seven7

Seven
Messages
3,444
Location
USA
I think the low NK is just another thing that needs to be fixed ( a result of whatever is we have), like hypothyroid, sleep issues,..... because the people I know that have the NK raised to normal levels, they still have CFS.
 

Hip

Senior Member
Messages
17,824
Most of the suspected pathogens would leave footprints or traces of their damage. Our medical technology could find the pathogen or at least the work it has done.

I am not sure if that is true.

It is only in the last decade or so that the infectious entity known as the non-cytopathic enterovirus was discovered. Very little research has been performed on non-cytopathic enteroviruses, but Dr Chia suspects that they may play a major role in ME/CFS. This infectious entity is extremely hard to detect, because it lives inside human cells. I believe you need to take a tissue biopsy to detect them. Perhaps these infectious entities may have widely infected the brain of ME/CFS patients, but you obviously cannot take a tissue biopsy from the brain of a living ME/CFS patient (although I have so much brain fog most days, that I probably wouldn't even notice if a bit of my brain was removed!).

My suspiciion, hence, is that it is an issue autoimmunity and not a pathogen.

Autoimmunity and a pathogenic infection are not mutually exclusive: many pathogens can cause autoimmunity, and then these autoimmune processes can do just as much damage in the body as the pathogen. Enteroviruses are probably the pathogens most capable of instigating autoimmunity.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
GG,
I agree with you.

Most of the suspected pathogens would leave footprints or traces of their damage. Our medical technology could find the pathogen or at least the work it has done.

The alternative is that there is a brand new bug out there that has inherently superior qualities in stealth and potency. The nature of scientific enquiry is that such new findings rarely happen.

In fact, Ockham's Razor dictates it is usually something simple, easily explained, that turns out to be the cause.
My suspiciion, hence, is that it is an issue autoimmunity and not a pathogen.

It was your post that made me think of this, and a few others, I think. I think that is why our illness is such a "mess", so to speak. I think I have heard other people make the accusation, that this is why our illness is not really studied, because then something would actually have to be done about it!

GG
 

SOC

Senior Member
Messages
7,849
So you may try taking medications that boost your CD8 T cell responses, but is will not really help, as coxsackievirus B infected cells are invisible to these CD8 T cells.

Do you know of a medication that boosts CD8 T cell responses? I have low CD8 cells and was told there was no direct treatment. I may have misunderstood that, though.
 

Hip

Senior Member
Messages
17,824
Do you know of a medication that boosts CD8 T cell responses? I have low CD8 cells and was told there was no direct treatment. I may have misunderstood that, though.

Do you have low CD8 T cell numbers, or low CD8 T cell activation?

I believe Echinacea, Astragalus and licorice increase CD8 T cell activation (but not cell numbers). Ref: here.

The supplement fucoidan (from brown seaweed) increases CD8 T cell numbers. Ref: here.

Note that confusingly, CD8 T cells have many different names (synonyms):

CD8 T cells
cytotoxic T lymphocytes
cytotoxic T cells
cytolytic T cells
killer T cells
T killer cell

All these names mean the same thing.