Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

[Jesse2233]

Another angle is the potential densensitization mechanism of Ty Vincent's antigens and Gottfries' Staph vaccine and the strong response sometimes seen.

 

[ljimbo423]

This article is written by Dr. Alex Vasquez, who has spent years researching and teaching the causes of inflammation and inflammatory diseases.

Although the heading of this article mentions Fibromyalgia, the author also says cfs has the same pathology and it is also mentioned in the article.

I think he has the best explanation I have ever seen. Here is a diagram of how he believes FM and cfs originate, progress and create viscous cycles, that feed each other.

http://ndnr.com/pain-medicine/microbial-origins-of-fibromyalgia/

Jim

 

[Groggy Doggy]

That's what I'd like to know. I think it's partly to do with historical reasons, where in the US, the focus has tended to be on herpes family viruses.

But I think if we conducted a poll on these forums, you'd also likely find a lot more patients were tested for herpes family viruses than for enteroviruses. So even among ME/CFS patients, enterovirus is not considered interesting.

Yet Dr Chia thinks it is the most common cause of ME/CFS.

And we know that no ME/CFS outbreak can ever be caused by Epstein-Barr virus, HHV-6 or cytomegalovirus, because these herpes viruses never cause epidemics.

Only certain species of virus are capable of causing an epidemic, and coxsackievirus B and echovirus are among those viruses that can and do appear in epidemics. So these enteroviruses are excellent candidates to explain the historical epidemic outbreaks of ME/CFS. But not EBV, HHV-6 or CMV, as they do not cause epidemics. Have you ever heard of a mononucleosis outbreak? Never right? That's because EBV does not create epidemics (except perhaps some rare very localized outbreaks).

If I had tested positive for entero then I would have interviewed Dr Chia as a potential doctor to treat me. So how would he be able to say that entero is the common cause of ME, if he has not seen patients like me? I feel that for some people entero is a huge factor. But from my lab results, it's no factor at all.

 

[perrier]

@Hip given the myriad of different infectious triggers and cases without an infectious trigger, isn't it possible that any viral particles found in tissue are incidental to autoimmunity / immune dysfunction, are not causal, and would not be problematic with a normal immune system?

Yes, what we need is some other researchers or labs to get interested in enteroviruses, and then replicate Dr Chia's studies. It seems like Dr Chia is the world's only current researcher into enterovirus-associated ME/CFS.

Perrier: what about a retrovirus?
I recently read that some folks are getting better taking antiretrovirals.

Are the researchers looking at this, or has this possibility collapsed? What about a retrovirus that affects B cells, and that's why RTX works on some folks?

 

[lansbergen]

What do you say to the prospect that all of these treatments are also immune modulating / anti-inflammatory and any fall in antibody levels is the result of a normalizing immune system (and not a decrease in pathogen levels)?

But if the immunesystem normalizes will the pathogen levels not decrease????

 

[frederic83]

Also, going back to vaccination, it's possible (in fact probable) that someone already has one or more ME/CFS-associated viruses in their body, and thus perhaps a propensity to develop ME/CFS. Then when a trigger like a vaccination comes along, it works in conjunction with those existing viruses already in the body.

There is also the new Hepatite C drug, some people get CFS with it, so I'm wondering if in these cases, this powerful drug is not bothering other virus in the body that will lead to CFS.

 

[perrier]

i believe Dr Mikovits is still convinced there's a retrovirus out there. Isn't it worth investigating too?

She's saying not to vaccinate unless the vaccines become cleaned up, which apparently is possible.

I bring this up because some people are using antiretrovirals with results.

( forgive doubling this post; earlier attempt glued onto comment of others)

 

[anni66]

There is also the new Hepatite C drug, some people get CFS with it, so I'm wondering if in these cases, this powerful drug is not bothering other virus in the body that will lead to CFS.

Significant numbers of adolescent girls contracting CFS and other chronic illnesses after Gardisil vaccinations.

 

[frederic83]

Significant numbers of adolescent girls contracting CFS and other chronic illnesses after Gardisil vaccinations.

I know, hepatitis B and some flu vaccine too can precipitate CFS. There is something with viruses.
Don't know if a vaccine against a bacteria can do that.

 

[Learner1]

We're talking about a syndrome with many different subsets of patients.

It seems like debating what the cause of a headache is, or the cause of hepatitis. There's a long list of causal agents, and some patients may have only one, while others have several.

Going back to Naviaux's list of cell danger responses makes a lot of sense.

Many of us may be genetically predisposed. All of us have been exposed to toxins, whether mold, heavy metals, organophosphates, pharmaceutical drugs, vaccines, and chemicals in consumer or industrial products. We're bombarded with electromagnetic radiation. And many of us have been exposed to infectious agents, like viruses or bacteria.

Any one or all of the above can affect our biochemical pathways, organ system function, and make epigenetic changes to DNA, resulting in symptoms and illness, and causing autoimmunity.

While these cell dangers can be removed, it won't necessarily cure us. Its untangling the mess that's been made in the wake of these cell dangers... replenishing drained resources, reversing autoimmunity, restoring pathways, to come out the other end to a new normal, that's not sick.

So, yes it could be infectious only, or autoimmune only, or both, or neither, along with other problems.

....wish it were simpler...

 

[Hip]

What do you say to the prospect that all of these treatments are also immune modulating / anti-inflammatory and any fall in antibody levels is the result of a normalizing immune system (and not a decrease in pathogen levels)?

That's a really crucial question, and I provided an answer to it in this thread:

Have the results of Dr Chia's ME/CFS interferon treatment actually proven enterovirus causes ME/CFS?

Essentially the answer provided is this: if interferon improves ME/CFS by normalizing the immune system, and not by decreasing enterovirus load, then you would expect to get the same benefits from interferon irrespective of the particular virus the patient had.

But in fact, Dr Chia finds interferon works for active coxsackievirus B3 and B5 infections, but not for coxsackievirus B4. So this suggests it is the virus-killing effect of interferon, and not any immune system normalizing effect interferon may have, which leads to the improvements in ME/CFS symptoms, and in some cases complete remissions lasting for over a year.

This is also backed up by the fact that in a 1993 interferon for ME/CFS study, nearly all the patients who improved had elevated coxsackievirus B antibodies, and nearly all the patients who failed to improve had no detectable coxsackievirus B antibodies. That indicates that a positive response from interferon tends to requires an active coxsackievirus B infection, and tends not work otherwise. So that again contradicts the idea that interferon might improve ME/CFS by normalizing the immune system.

 

[anni66]

I know, hepatitis B and some flu vaccine too can precipitate CFS. There is something with viruses.
Don't know if a vaccine against a bacteria can do that.

I think it may depend upon the condition of the immune system when vaccinated?

 

[Jesse2233]

But in fact, Dr Chia finds interferon works for coxsackievirus B3 and B5, but not for coxsackievirus B4. So this suggests it is the virus-killing effect of interferon, and not any immune system normalizing effect interferon may have, which leads to the improvements in ME/CFS symptoms, and in some cases complete remissions last for over a year

Thanks Hip, good point. He told this to me in person as well when I asked if I could try interferon. However I wonder about his sample size. How many CBV4 and CBV3 patients did he try it on? A difference in antibody titers might just be statistical noise if the sample size was below 100

He also told me his son had CBV4 (in addition to CBV3) and received interferon as part of his full recovery. I should also note that his son got oxymatrine, ribivarin, and lamiduvine so that clouds the picture a bit

 

[lansbergen]

I think it may depend upon the condition of the immune system when vaccinated?

Likely

 

[Woolie]

Elderly people have encountered many infections in their lifetime and have antibodies to them. In flu epidemics it is young healthy people who die, not old healthy people as they have some immunity to the bugs.

I think flu is a bit different, because what kills most people is not the direct effects of the virus itself, but the extreme immune reaction they have to it.

Maybe someone who knows more could pitch in here?

 

[Hip]

If I had tested positive for entero then I would have interviewed Dr Chia as a potential doctor to treat me. So how would he be able to say that entero is the common cause of ME, if he has not seen patients like me? I feel that for some people entero is a huge factor. But from my lab results, it's no factor at all.

You might be right that to an extent, patients with active enterovirus infections may tend to go to Dr Chia. However, I would guess that most of his patients don't know in advance whether they have active enterovirus infections or not, because testing for enterovirus can only be done using expensive specialist tests available at only only two labs in the US.

And in Dr Chia's published letter, out of 200 consecutive patients that came to his office, he found 54.5% had their ME/CFS attributable to enterovirus.


Where were you tested for coxsackievirus B and echovirus, by the way? If it was not done at a lab that uses the antibody neutralization method (used by ARUP Lab and Cambridge Biomedical), or by Chis'a stomach biopsy testing, then your negative test results are useless and don't mean anything. The only blood test method that is sensitive enough to reliably detect chronic enterovirus infections is the antibody neutralization method.

 

[Hip]

Thanks Hip, good point. He told this to me in person as well when I asked if I could try interferon. However I wonder about his sample size. How many CBV4 and CBV3 patients did he try it on?

I am not sure, but in the video I quoted in the thread, Dr Chia says:

"Interestingly enough, my son also has coxsackie B4, and for coxsackie B4, the antibody titer did not change at all, which is what I usually see using ribavirin and interferon; it is ineffective against coxsackie B4."

Note that further evidence is the 1993 interferon study on 18 ME/CFS patients, in which generally patients with elevated CVB titers got better on interferon, but those with no detectable CVB titers (whose ME/CFS was probably due to some non-enterovirus infection) generally did not respond at all to interferon. So it looks like interferon only usaully works for enterovirus, and even then, only works for certain enteroviruses, but not others like CVB4.

So those facts tend to contradict the idea that interferon might improve ME/CFS by just normalizing the immune system to fix say autoimmunity, and instead indicate interferon improve ME/CFS by killing viruses.

 

[Woolie]

I agree the options are not limited to viral/infectious vs. autoimmune.

There is a relatively newly discovered group of immune disorders called auto-inflammatory disorders. Unlike MECFS, many of these disorders are associated with very visible markers, like rashes, high fevers, and high levels of C-reactive protein and other markers of inflammation. Unlike the common auto-immune diseases, the immune system doesn't attack itself (although all the inflammation can produce byproducts which can be dangerous).

These diseases are associated with periodic attacks (relapsing-remitting pattern). But at least one auto-inflammatory disease can cause almost constant symptoms in some unusual cases.

One of the commonly reported triggers for an episode is exertion. Others are infection.

These disorders are not the same as MECFS, but they demonstrate that immune abnormalities don't start and finish with the classic autoimmune diseases. And exercise may be a common trigger in all.

 

[Jesse2233]

So those facts tend to contradict the idea that interferon might improve ME/CFS by just normalizing the immune system, and instead indicate interferon improve ME/CFS by killing viruses.

Yes on the face of it they do. I would still be hesitant to hang a unifying theory of chronic enterovirus infection on these reports without a published study / data set or at least other clinicians replicating them, but I'm of course aware that these are limitations beyond Dr Chia's control, and that this is the limited information we have

 

[Hip]

There is also the new Hepatite C drug, some people get CFS with it, so I'm wondering if in these cases, this powerful drug is not bothering other virus in the body that will lead to CFS.

That is very interesting, I have not heard about this before. Do you know which hepatitis C drug can cause ME/CFS as a side effect? Would you have link or reference?

This article lists the new hepatitis C drugs, which are these four drugs:

Ledipasvir-sofosbuvir (Harvoni)
Ombitasvir-paritaprevir-dasabuvir-ritonavir (Viekira Pak)
Simeprevir (Olysio)
Sofosbuvir (Sovaldi)