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XMRV Virus Confirmed in CFS

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XMRV Virus Confirmed in CFS

Posted by Sapphire [2999.8617] on August 24, 2010 at 13:40:56:

"As we have been following in blog and newsletter articles, there have been many conflicting studies and a large amount of controversy over the initial study on XMRV virus and chronic fatigue syndrome. Several studies did not find the virus and raised questions about the initial study. Meanwhile, it was both fascinating (and at times a bit disgusting) to see the politics involved in the controversy.

With an exciting new study released this week, I am now comfortable that the question of whether XMRV (and related viruses) is present in CFS patients has been largely settled.

A well-done study out of the FDA and NIH has finally been published. Though the politics and controversy around the topic initially caused the study's publication to be held up, and subjected to even more detailed scientific review and scrutiny, it was worth the wait.

The study showed that evidence of XMRV virus (and related viruses called "MLV") was present in 86.5% of CFS patients vs. less than 7% of healthy controls. This is a dramatic difference and corroborates the WPI study. I was also very pleased to see that Dr. Anthony Komaroff was one of the study authors.

Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?

1. The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won't find it. Not finding it doesn't mean it's not there.
2. The researchers were unrelated to the WPI researchers and had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, but independent verification and confirmation still adds a lot.
3. That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not "too sensitive." A second form of confirmatory testing was also done to confirm positive results.

This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.

So What Does All This Mean?
Does this mean XMRV is causing CFS?

Not necessarily. Because so many infections have been documented in CFS, it could simply be a reflection of an immune dysfunction, and not the cause.

Might treatment help?

There is no proven treatment for this virus yet, but there are many promising candidates. These treatments are both risky and expensive, and so far not dramatically helpful, so I do not recommend your being the guinea pig to try them.

Even so, it may well be one more problem that helps drag you down. We have found that treating with the "SHINE Protocol" helps most people to improve (see our study showing an average 90% improvement). This suggests that simply supporting your immune function with SHINE may often be enough. Nonetheless, we still don't have a cure for everyone. So this offers important hope.

Should I be tested?

It depends. If the cost (about $650 last I checked) is not prohibitive, and you have family or doctors treating you like you're nuts, it may be worth it. Also, if you are in in litigation with an insurance company it may help (the insurance company will likely ignore it, but the judge may be more open to it see Battling Your Disability Insurer for CFS/Fibromyalgia Benefits? You're Not Alone!). Do the entire panel to avoid a false negative test. It will not affect treatment though at this time, so it is not critical to do. For more on the pros and cons of testing, read some of the XMRV testing and treatment experiences shared by members of our EndFatigue discussion board.

How does this help now?

This is one more potent confirmation that the illness is a real and physical disease. This has been obvious for a long time, but insurance companies and doctors could still be idiots and ignore the science. The media attention to this new study, and it being an NIH/FDA/Harvard study, will make it harder for nitwits to still make believe this is all in your mind. For perspective, doctors used to call Multiple Sclerosis "hysterical paralysis" and told women with lupus and rheumatoid arthritis that they were just hysterical until new testing confirming the illnesses became available and changed everything.

This is what is happening now for CFS and fibromyalgia."

http://www.endfatigue.com/health_articles_c/Cfs_fm-xmrv_virus_confirmed_in_cfs.html

Link to article:



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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL???

Posted by Sapphire [2999.8617] on August 25, 2010 at 14:22:24:

In Reply to: XMRV Virus Confirmed in CFS posted by Sapphire [2999.8617] on August 24, 2010 at 13:40:56:

Dr. Stoll,

I know from the archives that dysautonomia is the primary cause of CFS.

I am wondering how it is that 86.5% of CFS sufferers (versus only 7% of healthy controls) have the XMRV virus.

Does having dysautonomia reduce the immune function, which in turns allows viruses such as the XMRV to get a foothold in the body? Is the XMRV secondary to the dsyautonomia?

Thanks in advance for your thoughts on this!

Sapphire


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Walt Stoll [93.8951] on August 25, 2010 at 15:42:00:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? posted by Sapphire [2999.8617] on August 25, 2010 at 14:22:24:

Sapphire,

ABSOLUTELY, dysautonomia directly damages the immune system! The people who have "discovered" this viral relationship are still mired in the alopathic mindste that there is "one cause for one disease". Even if this has a direct erelationship. the question STILL is: what makes a person specificallly susceptible to this virus and why this specific set of symptoms?

OK. Let us say that this IS "the cause" now what are they going to DO about it. Viral causes are still among the most difficult things to treat.

Eventually all "scientific" minds are going to have to take one more step back into the causes of stuff. There they will find dysautonomia and holistic causations staring them in the face.

Walt


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 25, 2010 at 16:41:48:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Walt Stoll [93.8951] on August 25, 2010 at 15:42:00:

Thanks for your reply, Dr. Stoll,

I can see what you're saying.

I'm wondering, is it also possible that a viral infection (or other systemic pathogenic infection) could sometimes cause such stress on the body that it actually causes the dysautonomia?

Sapphire


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 26, 2010 at 13:39:05:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Walt Stoll [93.8951] on August 25, 2010 at 15:42:00:

Dr. Stoll,

I'm wondering, is it also possible that a viral infection (or other systemic pathogenic infection) could sometimes cause such stress on the body that it actually causes the dysautonomia?




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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Walt Stoll [93.8951] on August 26, 2010 at 14:08:10:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 13:39:05:

Yes, Sapphire.

Each condition would reinforce the other!

My interest in helping people see that they have at least SOME control on the direction of any condition.

There is a lot more than one can do to reverse dysautonomia than to reverse a chronic viral condition without doing something about the state of one's immunity.

Hope this helps.

Walt


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Nutmeg [4785.7783] on August 26, 2010 at 14:29:29:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 13:39:05:

Hi Sapphire,

I don't know about other pathogens, but the Lyme disease bacteria, borrelia burgdorferi, a spirochete, is known to modify the immune system and the environment of the host. I suspect that other pleomorphic and stealth pathogens can do this to some extent as well.


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 26, 2010 at 14:40:37:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Nutmeg [4785.7783] on August 26, 2010 at 14:29:29:

Hi Nutmeg,

I'm wondering about a multi-factorial cause/effect situation.

Say, for example, a person is stressed and because of that, their immune function isn't up to snuff. Then they get exposed to a virus or lyme, etc., and because of their already poor immune function, the virus wreaks havoc on the body, putting it under extreme stress, which then in turn creates the dysautonomia. In this sense, the virus is at least part of the cause of the dysautonmia and resulting CFS.




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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Walt Stoll [93.8951] on August 26, 2010 at 17:39:52:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 14:40:37:

Of course, Sapphire.

Walt


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Nutmeg [4785.7783] on August 26, 2010 at 18:03:51:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 14:40:37:

Hi Sapphire,

As complex and beautifully engineered as our bodies are, I don't think there could ever be a single cause for anything. Sometimes you get a miraculous synchronicity, other times a disaster.

Nutmeg


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 26, 2010 at 20:09:07:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Nutmeg [4785.7783] on August 26, 2010 at 18:03:51:

I actually wasn't thinking there was one cause, although I suppose sometimes there may be. It's just that dysutonomia is often cited on this board as the sole cause of CFS, and it seems that a virus or pathogen might also be the cause for some people, and if so, that virus or pathogen may need to be addressed rather than solely relying on the 3ls. I'm a big supporter of the 3ls, but IF there is also a pathogen, then it would seem wise to address it, along with the 3ls.



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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Nutmeg [4785.7783] on August 27, 2010 at 00:28:51:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 20:09:07:

I agree with you, Sapphire. The idea that dysautonomia is the sole cause of CFS is just too simplistic. There are so many other factors that can contribute, like viruses and other pathogens, the inability to properly eliminate toxins which can be acquired or genetic, many kinds of stress and traumas, tissue and structural injuries, and probably many that haven't even been thought of yet.

Finding a pathogenic causes for some of these ailments gives people hope, puts a name on a sketchy ailment, and shows people that they are not just nuts, as so many have been told by medical professionals.

Nutmeg


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by k. [2065.8928] on August 27, 2010 at 03:11:04:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 26, 2010 at 14:40:37:

In this sense, the virus is at least part of the cause of the dysautonmia and resulting CFS.

Hi Sapphire,

I've been reading bits and bobs of this thread with interest, and could not resist the temptation to respond.

I understand what both you and Dr. Stoll are saying. I have a feeling Dr. Stoll might say that all roads lead to the 3LS. By this I mean, if the person was practicing the 3LS in the first place, their immune system would be strong enough to resist the virus, and consequentially the dysautonomia and LGS would not take hold. But, even if they did NOT practice the 3LS, the ONLY combat against these conditions would still be to practice the 3LS in order to strengthen the immune system, heal both the disaunomia and the LGS and to fight the virus when it tries to rear it's ugly head.

So then the issue is if not before, then at least after practice 3LS and the rest might not be as significant.

Ok, butting out now and I apologize for discussing health, but it's just hard to resist sometimes Sapphire because you always bring up such fascinating and provoking topics.

k.



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P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by k. [2065.8928] on August 27, 2010 at 03:58:29:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by k. [2065.8928] on August 27, 2010 at 03:11:04:

Sorry BUT it was late when I posted and I mistakenly said LGS instead of CFS, but of course, LGS is a link in the chain of events. How does this look to you?

stress -> LGS -> dysautonomia -> virus -> CFS


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Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Walt Stoll [93.8951] on August 27, 2010 at 08:14:51:

In Reply to: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by k. [2065.8928] on August 27, 2010 at 03:58:29:

Pretty good, k!

(or any mix or order)

Walt


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Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 27, 2010 at 11:31:10:

In Reply to: Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Walt Stoll [93.8951] on August 27, 2010 at 08:14:51:

Thanks Dr. Stoll & k!

I was thinking this order might be a possibility, too:

stress -> LGS -> more stress -> virus -> more stress >> dysautonomia -> CFS


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 27, 2010 at 11:33:25:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Nutmeg [4785.7783] on August 27, 2010 at 00:28:51:

Well said, Nutmeg! :)


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Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Sapphire [2999.8617] on August 27, 2010 at 11:41:24:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Nutmeg [4785.7783] on August 27, 2010 at 00:28:51:

And what may make it even more confusing for both the patient and the practitioner is that IF there was initially a pathogen involved, maybe that infection ran its course and is no longer even present, but the after-effects (such as dysauthonomia) still remain, so treating the infection may not even be an issue in some people. I can see how treating the dysautonomia with the 3LS certainly seems imperative in any case.


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Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by k. [2065.8928] on August 27, 2010 at 13:01:27:

In Reply to: Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Walt Stoll [93.8951] on August 27, 2010 at 08:14:51:

Thanks Dr. Stoll!

k.


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Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive.

Posted by Walt Stoll [93.8951] on August 27, 2010 at 14:38:38:

In Reply to: Re: P.S.. Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by Sapphire [2999.8617] on August 27, 2010 at 11:31:10:

Pretty good, Sapphire!

Walt


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To: k.

Posted by Sapphire [2999.8617] on August 27, 2010 at 16:01:37:

In Reply to: Re: XMRV Virus Confirmed in CFS ---- DR. STOLL??? Archive. posted by k. [2065.8928] on August 27, 2010 at 03:11:04:

k,

Also, just wanted to say thanks so much for the compliment... you raise fascinating topics, too. Great minds think alike. :)

Sapphire


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Re: To: k.

Posted by k. [2065.8928] on August 28, 2010 at 02:02:03:

In Reply to: To: k. posted by Sapphire [2999.8617] on August 27, 2010 at 16:01:37:

Great minds think alike. :)

And thank YOU Sapphire, I take this as quite a compliment! :o)


k.



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