CFS: Inherited Virus Can Cause Cognitive Dysfunction and Fatigue

[Firestormm]

Hi Firestormm,
You've probably worked it out now, from the second paper that you posted, but I think you may have missed this from the first paper:

"The investigators assumed that the integrated virus had become reactivated in these patients; however, to their surprise, they found that these IHS patients were infected by a second unrelated strain of HHV-6."

So it seems that they are saying that infection with a second exogenous HHV-6 virus leads to, or triggers, the CFS symptoms in the patients with the inherited virus.

You been able to get hold of the full paper?

I don't know how they can conclude that a second infection of HHV-6 might be the trigger and have led to the experienced symptoms. I don't clearly know enough about virology. Presumably from the patients point of view there was a specific event that led to the production of their symptoms i.e. a starting point. I don't know how you might conclude that an 'unrelated strain' of infection currently in the body, entered the body at a certain time that coincides with the onset of symptoms. Maybe you don't. But if we are saying HHV-6 is asymptomatic how would the patient know or anyone else whether it was a trigger or not? Anyway... perhaps the full paper can help explain.

 

[Valentijn]

You been able to get hold of the full paper?

The abstract is at http://www.journalofclinicalvirology.com/article/S1386-6532(99)00079-7/abstract and the full paper can be bought there if you're curious enough.

I don't know how they can conclude that a second infection of HHV-6 might be the trigger and have led to the experienced symptoms. I don't clearly know enough about virology.

Herpes viruses in general are well-known for interacting with and reactivating each other.

 

[Legendrew]

The thing that interests me most here is t hat I personally came down with Pityriasis rosea about a year and a half before getting me/cfs (my trigger was mmr/dtap vaccines incidentally). However in the first few months of my me/cfs I had a slight recurrence of the rosea rash (one on left wrist and several across my chest/stomach) - my doctor confirmed it was rosea which surprised me and him considering the very low rates of people getting it twice however he concluded it was probably isolated from the me/cfs I'd developed. Makes me wonder whether me/cfs could have a herpes virus mixed in it somewhere since rosea is thought to be cause by hhv6 or 7 - after reading this ( http://hhv-6foundation.org/news/cfs-a-herpesvirus-infection-of-the-vagus-nerve) it combines my ideas that the vagus nerve plays a major role and my personal experience with rosea both prior to and after me/cfs development.
Maybe the reason that drugs such as rituximab work is that the body is mounting a large immune attack on the pathogen using b-cells and antibodies causing further damage to the vagus nerve, and by stopping this onslaught near-all the symptoms disappear only to reappear when the b-cells recover and begin attacking the vagus nerve again. It could potentially explain why some fully seem to fully recover (if the body has successfully eliminated the virus but the body is still incorrectly attacking the vagus nerve) whereas the majority relapse (the virus is still present or the immune dysfunction has remained).
It's nice to see some good theories developing that are testable and explain all the symptoms we experience on a day to day basis.

 

[Bob]

You been able to get hold of the full paper?

No, afraid not. But I haven't actually attempted to, because the published details were enough to satisfy my interest in it.

I don't know how they can conclude that a second infection of HHV-6 might be the trigger and have led to the experienced symptoms. I don't clearly know enough about virology. Presumably from the patients point of view there was a specific event that led to the production of their symptoms i.e. a starting point. I don't know how you might conclude that an 'unrelated strain' of infection currently in the body, entered the body at a certain time that coincides with the onset of symptoms. Maybe you don't. But if we are saying HHV-6 is asymptomatic how would the patient know or anyone else whether it was a trigger or not? Anyway... perhaps the full paper can help explain.

There are ways to determine that the exogenous virus is causing the symptoms without knowing the full medical history of the patient...

In this study, they first determined that a virus was actively replicating, because HHV-6 messenger RNA (mRNA) was present. (I assume that HHV-6 uses mRNA to replicate.) Then they sequenced the mRNA and discovered that it did not belong to the endogenous virus, but belonged to a different, exogenous, virus. (Or the same virus but a different strain.)

Then they treated the patients with valganciclovir. I'm not certain, but valganciclovir probably doesn't have any effect on the mechanism which reactivates integrated HHV-6, but probably only work on normal viral replication mechanisms.

I assume that the symptoms of the treated patients reduced after treatment, although it doesn't actually say so in any of the info provided in this thread.

If the symptoms did reduce, then they can conclude, or at least hypothesise (because they successfully eliminated the mRNA, so the virus was no longer replicating) that the replicating exogenous virus contributed to the symptoms. (Note that valganciclovir wouldn't have any effect on the endogenous virus unless it was reactivated and actively replicating.)

If the symptoms didn't reduce, then I don't know how they can make the conclusion that they did.

That's my reading of it, but I might have misinterpreted, and I don't have access to the full info.

 

[Gijs]

It is well known that stress i.e. autonomic overdrive can cause reactivation of all herpes virusses. One virus is not the cause for ME/CVS. I think.

 

[Nielk]

Firestormm - I love the word "kerfuddled" that you use. That is how I find myself feeling most of the time with my cognitive deficiency.

 

[Legendrew]

It is well known that stress i.e. autonomic overdrive can cause reactivation of all herpes virusses. One virus is not the cause for ME/CVS. I think.

I couldn't agree more - my money is on either different virus triggering an autoimmune response or an autoimmune response triggering viral re-activations of previously latent viruses.
I do have another theory/idea combining a few things i've read about but i'm still trying to understand why my idea would lead to post-viral fatigue/mitochondrial dysfunction.

 

[Erik Johnson]

North Lake Tahoe Bonanza
Friday October 10 1986

-Could explain fatigue illnesses-

patients tested for new virus

by Jean Lamming NLTB Staff Writer

An Incline Village resident stricken with Chronic Epstein-Barr Virus said Wednesday that national medical researchers believe a new virus they have discovered is partly to blame for his syndrome.
Bill Rulle said researchers from the National Institutes of Health in Bethesda, Md. interviewed him last week in Incline and took samples of his blood. They will test it for a virus they discovered a year ago and think might be a partial culprit in the fatigue syndrome that struck some 200 North Shore and Truckee residents in the last two years.
"They think there might be a new virus and that what it is doing is triggering the Epstein-Barr Virus reaction on a constant basis." Rulle said of the National Institutes of Health (NIH) researchers.
The researchers are calling the new virus HBLT and B-cell lymphoma, Rulle said. New tests for the virus are inconclusive.
Its symptoms include a positive test for Chronic EBV and the fatigue syndrome that accompanies it, said Rulle, who calls himself an "interested patient."
Doctors, including Incline internist Paul Cheney who treated many area fatigue patients, and officials at the NIH have been vague on the subject of a new virus.
Cheney said in September that news of a new medical discovery that might eventually be linked to Lake Tahoe would be announced in a prestigious medical journal this year.
A spokesman for Science magazine, a definitive professional research journal, said Monday that the magazine would carry two research articles from the NIH's cancer research division in its Oct. 24 edition.
The Science spokesman declined to comment on the content of the articles and said rsearchers involved are bound not to release information on articles before they are published.
The NIH researchers, who have reportedly tested about 72 blood samples from area residents for the presence of the new virus, took another 90 samples from residents during a visit last week, Rulle said.
As many as 90% of he 70-some Lake Tahoe CEBV patients tested for the new virus showed positive signs of carrying it under the new test, Rulle said. Results of blood tests from people who are not infected with CEBV showed none were affected with the new virus either, he said.
-------------------------------------------

"They are relatively sure that the new virus is in fact activating the EBV and not the other way around."
-Bill Rulle Incline Village fatigue illness victim
-------------------------------------------

The test is too new to be conclusive, but supports the hypothesis that CEBV, which most adults carry latently, wsa activated in many area victims by the new virus, Rulle said.
"That was a scientific basis tat what we have here is a new virus and all we can see as a symptom is CEBV, said Rulle.
"They are relatively sure that the new virus is in fact activating the EBV and not the other way around." he said of researchers.
The symptoms of the new virus fall under the umbrella of symptoms CEBV victims suffer from in varying combinations and degrees. Rulle said. These include chronic fatigue, upper respiratory-tract infections, headaches, tingling and loss of feeling in extremeties, dizziness, memory loss, sleep disturbances and more.
Rulle, who has been sick with CEBV for about two years, said if people at Lake Tahoe have the new virus, they might be among the first to develop antibodies to it.
"That is why we have tow groups from the NIH very interested - the scientific group that discovered it (new virus) and the people who recently visited who study viral groups in populations

 

[MeSci]

I couldn't agree more - my money is on either different virus triggering an autoimmune response or an autoimmune response triggering viral re-activations of previously latent viruses.

How might an autoimmune response trigger viral reactivation?

 

[Eliza]

just wondering ...

I had a PCR DNA test of several virusses done on stomach and duodenum tissue.

While my IgG titers for EBV and CMV are skyhigh EVERY time they run a standard bloodtest,

I had 6130 copies of HHV6 in my stomach tissue while the normal range was 0-50.

I did NOT test positive via PCR DNA for CMV, EBV, parvo, Bartonella and Borellia ;;;

Could I possibly be one of those chromosomal integrated HHV6 people?

 

[vli]

Eliza my level was 2093 on a stomach biopsy done in august '11. but I don't think these numbers tell us whether it's CIHHV6 or not.

 

[Firestormm]

How does this research cross-over with that being done by Montoya, using the same drug (Valganciclovir) but on HHV-6; and not the IHS version of the virus?

I mean according to this he was achieving some positive results already using this drug. Although that is only a review and I think we are still waiting for results of a properly blinded trial to be published.

Does this paper at the top of the thread identify a new way in which this virus can become reactivated and also the inheritance factor: is that what is different? Because presumably once you have identified HHV-6 (present in 95% of the general population) in a person with ME (presumably indicating a reactivated virus - at least that is I understand the hypothesis here) you are still treating it with the same drug regardless of how you came by it or what 'strain' it might be.

Kerfuddled again folks

 

[Firestormm]

Bob et al. this report appears to refer to the full paper in some of it's content although I can't be certain but it would seem to continue with more specifics...

Some chronic fatigue might be caused by human herpesvirus
(dailyRx News) HHV-6 is the common name for two viruses which nearly every human has had by their second birthday. Some people are born with a strain of HHV-6 virus that is inherited from a parent. This inherited HHV might offer a clue to chronic fatigue symptoms.

A new study found that chronic fatigue is more common in people who have an inherited strain of HHV-6.
Inherited HHV-6 makes patients more prone to other HHV infections. The combination of HHV infections may lead to chronic fatigue symptoms.
This study also found that these patients might be helped with antiviral therapy.

read more...

 

[Erik Johnson]

Hillary Johnson talks about the lackluster investigation into the Tahoe epidemic, but that
"Nevertheless, on the basis of that investigation, the agency felt under pressure to somehow identify the phenomenon, "

I'll give you three guesses why.

"HBLV"
"HBLV"
and "HBLV" (now known as HHV6A)

http://www.theoneclickgroup.co.uk/news.php?id=744#newspost

 

[NilaJones]

Thank you Firestormm, here's the link to the paper:
http://onlinelibrary.wiley.com/doi/...ionid=D3356F1AEF3DD7CDADE09D09BE598946.d01t02

Was anyone able to access the fulltext?

A popup says one can pay a fee to do so, but does not say how much the fee is or how to pay it.

 

[Sushi]

Was anyone able to access the fulltext?

A popup says one can pay a fee to do so, but does not say how much the fee is or how to pay it.

You can "request an article" -- ask Snow Leopard on this thread: http://forums.phoenixrising.me/index.php?threads/would-you-like-to-request-a-paper.9212/

Sushi

 

[NilaJones]

From what I've seen of Montoya's stuff, he determines that HH6 is active and replicating by testing blood for antibodies to the virus. This test is commonly available at commercial labs (I have had it done locally several times, at different stages of illness).

Healthy people have very low antibody levels to HH6, and the idea is that sky-high levels like mine indicate active infection.

I don't know if the RNA test referred to in this paper is commercially available.

There is a commercial test that tells you if you have A or B, but my insurance doesn't cover it and it's about $550, so I have not done it yet. I might be a useful indicator -- there was a theory floating around, back when I was reading papers on HH6, that the rarer strain was more likely to make people actively sick (e.g. ME/CFS) if they caught it.

So, valcyte might be an actual cure for a subset of ME/CFS people. Montoya at least used to think so, right?

 

[NilaJones]

You can "request an article" -- ask Snow Leopard on this thread: http://forums.phoenixrising.me/index.php?threads/would-you-like-to-request-a-paper.9212/

Sushi

Thanks!

I made the request .

 

[Firestormm]

NilaJones et al. I happened to notice this evening that Cort has written a rather full-on article about this study and it would seem the whole HHV-6 saga. I can't say more about it because it is rather a lot to take in and he probably had access to more information - maybe the full paper and also contacts at the foundation - than I obviously have had. But you might like a look. I'd be interested in what you think but will follow others' comments on his blog.

 

[NilaJones]

NilaJones et al. I happened to notice this evening that Cort has written a rather full-on article about this study and it would seem the whole HHV-6 saga. I can't say more about it because it is rather a lot to take in and he probably had access to more information - maybe the full paper and also contacts at the foundation - than I obviously have had. But you might like a look. I'd be interested in what you think but will follow others' comments on his blog.

Thanks!!!