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

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
In my opinion, one of the most interesting papers is the one that describes a Giardia outbreak in Norway and follows the patients that developed ME afterwrds.
Giardia causes ME? Or is it just a triggering event?

....brain fog.....

Reading case descriptions of the first outbreaks is interesting, it seems that the clinical evolution of those cases resembles more of a acute encephalytis than a chronic imune disfunction, maybe the virulence of the infectious agente has changed..
And ther is this very interesting article:

http://www.medical-hypotheses.com/article/S0306-9877(15)00382-5/fulltext
 

andyguitar

Moderator
Messages
6,598
Location
South east England
There is another way of looking at the chronic infection idea. Something else is going on that gives the appearance of an infection. There other things that can cause the immune system to start producing various immune complexes including interferon. One which I have been studying is elevated levels of Serotonin. This can alter the immune system AND cause the kind of symptoms experienced by those who have ME and the other illnesses this website covers.
 

wastwater

Senior Member
Messages
1,271
Location
uk
If there is leaky gut and blood brain barrier could things like enterovirus be travelling to the brain,maybe also like in Alzheimer and fungus in the brain
 

andyguitar

Moderator
Messages
6,598
Location
South east England
Very, very unlikley. I really dont think the symptoms of ME are caused by a virus or any other infection. That may be what starts in some cases, but the epidemiology and pathological picture suggests its persistance is due to other factors. It's like looking for the Loch Ness monster. Even though it's not been found some people will say thats because no one has had a proper look for it. Same with ME and the virus theory.
 

duncan

Senior Member
Messages
2,240
I understand that IgG antibodies just mean that the body has encountered a particular pathogen before and is keeping these antibodies around in case the pathogen visits again.

Only partially accurate. One's immune system automatically shifts from IgMs to IgGs after roughly 30 days or so. If a person is infected with a pathogen and is unable to resolve it - with or without treatment - after a few weeks of being persistently infected, it is expected they will show elevated IgG values reflective of an active infection. Unfortunately, clinicians make this error as well, ie, that raised IgG values only speak to a prior infection.

Still, your point is a valid one in that once infected, many people will show elevated titres even after being cured. This confirms that often indirect testing has its limitations.
 
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perrier

Senior Member
Messages
1,254
I wrote to Prof Lipkin once, asking how well his high-throughput sequencing ME/CFS study would pick up chronic enterovirus infections, and he told me that he would not be able to detect enterovirus in the ME/CFS blood samples that he used (and as we know, chronic enterovirus is usually not found in the blood), and could only detect this virus if you used tissues from an infected organ as the source material for the high-throughput sequencing (which he did not do in his ME/CFS study).

But then he added that "I'm not yet persuaded that anyone has found compelling evidence implicating any agent in CFS/ME." But his email was terse, and he did not provide any explanation for why he thought the existing evidence was not compelling enough.
Why is Dr Chia sort of on the sidelines? A few years ago on the telephone he told me virtually all his patients with CFS were positive for enterovirus.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
[QUOTE="jpcv, post: 914804, member: 29252"
Reading case descriptions of the first outbreaks is interesting, it seems that the clinical evolution of those cases resembles more of a acute encephalytis than a chronic imune disfunction, maybe the virulence of the infectious agente has changed..
And ther is this very interesting article:

http://www.medical-hypotheses.com/article/S0306-9877(15)00382-5/fulltext[/QUOTE]

The presentation of the disease changed after the introduction of polio vaccine in the late 50s, which may be significant. There have been odd bits I have read about other enteroviruses causing epidemics in places like India but only snippets and never enough to get your teeth into. Once we had antibiotics, microbiology was neglected but that is changing again.

It has been frustrating over the years how much interesting research happens then is just dropped. It took years and a small fortune for HIV testing to be worked out. Things like the VP1 test may never have gone anywhere but it was never refined or studied properly. Diastolic heart failure was found by the NIH but never explored, even low blood volume, which should be straightforward to test a large number of people, is just left to drift.
 

duncan

Senior Member
Messages
2,240
Regarding @Jesse2233 topic: personally, I see a lot of similarities between ME/CFS and channelopathies. I would not be surprised to see us eventually diagnosed as having an acquired (or triggered?) channelopathy.

But I can see the arguments for autoimmune disease and/or persistent infections as well, and both convincingly so.
 

Hip

Senior Member
Messages
17,844
Why is Dr Chia sort of on the sidelines? A few years ago on the telephone he told me virtually all his patients with CFS were positive for enterovirus.

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).
 
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perrier

Senior Member
Messages
1,254
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.
All your points are well taken. Has the Dr Davis team contacted Dr Chia? Dr Chia has seen a large number of CFS patients. He doesn't seem to be the sort of fellow who inserts himself. But his information urgently needs further evaluation if we are to get rid of this horror.
 

wastwater

Senior Member
Messages
1,271
Location
uk
There are no EBV epidemics like you say
I always felt that EBV was something that slipped out of latency due to whatever had caused an immunodeficiency/dysregulation
 

Hip

Senior Member
Messages
17,844
@perrier, even if enterovirus and herpes viruses are causes of ME/CFS, I don't think it is always necessary to view this disease from the viral perspective. It's good to have researchers like Ron Davis and Fluge & Mella looking at ME/CFS pathophysiology from a different angle, such as the energy metabolism angle, or such as the immunological dysfunction angle.

It's possible they will discover a way to successful treat ME/CFS via interventions in energy metabolism or the immune system, without necessarily treating any underlying viral infection. As long as the treatment works, that's what counts.

So I like to see a subset of researchers thinking about ME/CFS in these terms. You would not want to put all your eggs in one basket when it comes to the areas of ME/CFS research you explore, as you never know where an amazing discovery might come from. That's what's good about diversity in research. Though nevertheless, you'd hope that the ME/CFS researchers would have some basic knowledge of other fields of ME/CFS investigation.



There are no EBV epidemics like you say
I always felt that EBV was something that slipped out of latency due to whatever had caused an immunodeficiency

Although EBV cannot create major epidemic outbreaks, we do know that around 9% of people who suffer mononucleosis will go on to develop ME/CFS, although some of these cases will have their ME/CFS clear up after around a year or two.

So that suggests EBV is capable of causing ME/CFS.
 

perrier

Senior Member
Messages
1,254
@perrier, even if enterovirus and herpes viruses are causes of ME/CFS, I don't think it is always necessary to view this disease from the viral perspective. It's good to have researchers like Ron Davis and Fluge & Mella looking at ME/CFS pathophysiology from a different angle, such as the energy metabolism angle, or such as the immunological dysfunction angle.

It's possible they will discover a way to successful treat ME/CFS via interventions in energy metabolism or the immune system, without necessarily treating any underlying viral infection. As long as the treatment works, that's what counts.

So I like to see a subset of researchers thinking about ME/CFS in these terms. You would not want to put all your eggs in one basket when it comes to the areas of ME/CFS research you explore, as you never know where an amazing discovery might come from. That's what's good about diversity in research. Though nevertheless, you'd hope that the ME/CFS researchers would have some basic knowledge of other fields of ME/CFS investigation.
----------------

Perrier:
Your last sentence is the point I was trying to make. And I know Dr Davis will not leave a stone unturned, but it's just that Dr Chia's work is not getting enough investigation.
 

Hip

Senior Member
Messages
17,844
I know Dr Davis will not leave a stone unturned, but it's just that Dr Chia's work is not getting enough investigation.

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.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
@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?

To play devil's advocate to my own question, maybe some have a chronic infection driving their immune activation, others have faulty b-cells, and some have both, and that there is a potential for self correction (that differs by individual) depending on what their issue is and where you address the problem.

And maybe the elderly are less susceptible to the autoimmune reaction that occurs in the presence of certain chronic pathogens even if they're more susceptible to classic chronic infections like HIV and Hep C
 
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Groggy Doggy

Guest
Messages
1,130
IMO, different things can trigger ME at the onset. The published research is in its infancy, and I don't think we can draw any broad range conclusions that apply across the board. I don't respond to treatments in the viral or autoimmune category, so my vote for myself, is it's neither.
 

Hip

Senior Member
Messages
17,844
@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?

That is always a logical possibility: that the infection triggers ME/CFS by causing say autoimmunity or some other immune dysfunction; but then after this triggering event, the virus plays no further role in the maintaining the disease. The disease is able to maintain itself without the further assistance from the virus — that's feasible.

And there seems to be cases of ME/CFS triggered by vaccination, which perhaps adds weight to this idea that this is a trigger-able disease that does not need any chronic viral infection to drive it, and once triggered, the disease maintains itself.


However, I think the evidence that tends to argue against this possibility is the antiviral and immunomodulatory treatments of ME/CFS, such as interferon, ribavirin or oxymatrine for enterovirus-associated ME/CFS; and Valcyte, Valtrex, cidofovir or foscarnet for herpes virus-associated ME/CFS.

With these, we tend to see a correlation with reduced viral load and reduced ME/CFS symptoms (and occasionally full remissions) when these antiviral treatments are given; and when the treatments are stopped, we often see the reverse: increased viral load and increased ME/CFS symptoms returning.

So that suggests that these viruses are playing some sort of role in ME/CFS, at the very least being a partial maintaining factor in the disease, and at the very most, the sole and only maintaining factor.


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.

That is speculation, but if you look at the autoimmune disease of multiple sclerosis, which is linked to EBV by good evidence, people usually catch EBV when they are a teenager or in their 20s; but MS may only appear decades later in life. So if EBV is the cause of MS, we see that EBV just waits patiently for years the opportunity to instigate MS.



To play devil's advocate to my own question, maybe some have a chronic infection driving their immune activation, others have faulty b-cells, and some have both, and that there is a potential for self correction (that differs by individual) depending on what their issue is and where you address the problem.

Yes, the possibility of ME/CFS subsets is always there, and a lot more research is needed in order to identify and characterize these subsets.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
However, I think the evidence that tends to argue against this possibility is the antiviral and immunomodulatory treatments of ME/CFS, such as interferon, ribavirin or oxymatrine for enterovirus-associated ME/CFS; and Valcyte, Valtrex, cidofovir or foscarnet for herpes virus-associated ME/CFS.

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)?