Retrovirus Linked To Chronic-fatigue Syndrome

[EarthMother]

I see news blurbs all over today about some new research that suggests a retrovirus <XMRV> is linked to CFS.

http://mobile2.wsj.com/device/article.php?...oWhatsNewsThird

Best I can tell, there is Not a commercial lab doing the xmrv test at this time. If folks here otherwise, I 'd like to follow up with my PCP about this at next visit.

[iheartcats]

I found the article on Scientific American and will paste it here.

But - how closely IS CFS linked to POTS? I have bad fatigue and muscle/body aches - those are two of my worst symptoms. Is this something I could ask the Rheumotologist in my upcoming visit?

Second, the reverse transcriptase inhibitors medications have very serious side effects in addition to being very costly. Would these need taken forever if they work? Or are they medications that could 'heal' these retroviruses?

ARTICLE:

SciAm.com

News - October 8, 2009

Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis

Recently implicated in some severe prostate cancer patients, the retrovirus XMRV has now been found in many with chronic fatigue--changing the landscape for diagnosis and possible treatment

By Katherine Harmon

Click here to find out more!

More so than many illnesses, chronic fatigue syndrome (CFS) frustrates those who suffer from it and those close to them, due to its nebulous assembly of symptoms, along with continued controversies over its etiology, diagnosis, treatment and even its nomenclature. Now, the discovery of a familiar retrovirus in many CFS patients could bring new energy to the field?and fresh hope for more specific medical care.

Chronic fatigue is in part a misnomer. The syndrome often has more to do with immune system abnormalities than pervasive tiredness?although the two can go hand in hand. The symptoms range from exhaustion to muscle pain, giving CFS a reputation among some as a "wastebasket diagnosis". The slipperiness of the syndrome is in part because "it's diagnosed based on exclusion," says Judy Mikovits, director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., and co-author of research on the retrovirus findings published online today in Science. Doctors often apply the label if no other explanation can be found for a patient's symptoms, which may be part of the reason it seems to pop up in everyone from overworked career women to continually sick children.

Roughly 17 million people worldwide are thought to have CFS, but given current diagnosis methods, the true number could be much higher or lower. Having a specific virus to look for would make for much more robust tests and possibly even be a step toward treatment. Mikovits's team thinks they have found just such a candidate.

The xenotropic murine leukemia virus?related virus (XMRV), a type of gammaretrovirus, has recently been linked to strong cases of prostate cancer. Like CFS, this cancer involves changes in an antiviral enzyme (RNase L). The prostate cancer discovery, described last month by Ila Singh, an associate professor of pathology at the University of Utah in Salt Lake City, et al. in the Proceedings of the National Academy of Sciences (PNAS), along with a traditionally high incidence of cancer in CFS patients, got Mikovits and her team thinking: Would they find the same retrovirus in people with CFS?

After analyzing biological samples from more than 100 CFS patients for the retrovirus, two thirds of them were found to test positive for the virus?compared with 3.7 percent of 218 healthy volunteers who were screened.

To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev. "We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus? "Ila's work shows that everyone's susceptible," Mikovits says of the PNAS paper by Singh that illustrates the link between prostate cancer and XMRV and shows that the virus is not linked to a genetic mutation.

Experiments in Mikovits's lab proved that the retrovirus can be transmitted via blood by infecting healthy cells drawn from volunteers with material from XMRV-positive CFS patients. Mikovits hopes to soon have a better understanding of how the virus might be transferred in the real world, especially among families. If it, for instance, is like human T-lymphotropic virus type 1 (HTLV-1), it may be communicable through breast milk or if it's like a herpes virus that is common in CFS, it may be passed along to offspring.

Precisely how this virus is related to chronic fatigue, however, remains a mystery. One of the problems with tracking down CFS is that it may not be a single ailment. "We think that the problem is that CFS is a collection of many, many different diseases even though it has similar symptoms," says Brigitte Huber, a professor of pathology at Tufts University's Sackler School of Graduate Biomedical Sciences in Boston. She and others suspect that the retrovirus may be unleashing other underlying conditions and viruses in the body.

"This new retrovirus may be able, through infecting human cells, [to] induce a transcription of an endogenous virus," says Huber, who has been studying the presence of an ancient retrovirus (HERV-K18) dormant in most people but active in patients with CFS and multiple sclerosis. "We've already shown that Epstein-Barr virus can do exactly this."

Even in their testing for the XMRV retrovirus, Mikovits says, "We could see a human endogenous virus at the same time" as XMRV. "There are a number of old diseases that seem to be rising at an infectious rate," she says. Although this background noise of various viruses may be difficult to sort though, it brings clues to help researchers find the root cause of CFS. "It's possible, downstream, that this will all feed into the same mechanism," Huber says.

Even before the precise mechanisms are found, work toward finding treatment proceeds. Animal model testing is already underway, and Mikovits notes that her team is looking into some reverse transcriptase inhibitors that have already been approved by the U.S. Food and Drug Administration for other uses.

"Now we have a drug target and a marker," Mikovits says. "If we treat them with a drug and they get better, we win."

In the meantime, her team has been making quick strides toward a simple diagnostic test that doctors could use to check for the virus. Tests have been running smoothly in the lab, she notes, with some diagnostics companies already interested in the technology. She predicts a test will be available in less than six months. Mikovits adds that she is "excited that we will actually have some causes?rather than just building a better wheelchair."

[juliegee]

Very interesting- thanks for sharing!

[Mrs. Burschman]

Interesting. Thanks for posting!

As for CFS and POTS, I've heard that there's a lot of overlap. A high percentage of CFS patients have orthostatic intolerance.

Amy

[Sophia3]

Interesting THEORY but I've heard so many over the years...hard for me to get excited.

there was something that Kutapressin helped? then what was called a "stealth virus" 15 years ago or more...then, well I forget.

like ANS issues, CFS is not SAME cause for everybody thus no real answer. I STILL remember being told I had "Chronic adult mono" before they called it Chronic EPstein Barr...so, color me old and cynical and dealing with this since 1985!

I also remember Dr. Cheney once saying--about 19 years ago, but never heard the follow up, that HIV was not the sole cause of AIDS! Yikes...so I never know what's behind the story..and behind that story.

But if they can sift OUT something speficically to help a few, that's a start

[ana_22]

heres some more info:

http://www.wpinstitute.org/xmrv/xmrv_qa.html

[iheartcats]

The more one reads about all this, the more you see crossover from Dysautonomia and POTS.

How do you know you have CFS though? The symptoms are so similar sometimes.

[Sophia3]

just got Dr. Bell's email, Lyndonville News on this topic (he worked with Dr. Streeten years ago abotu CFS & OI links. My INITIAL dx was CFS in 1986 or 85..forget year now)

""By the way, people are already asking me if this is related to the retroviral sequences we published in 1991.''

Dr. Bell would love to be able to test some of the kids he saw with CFS to see how this matches up to other viruses/symptoms.

[MelissaCrystal]

This discovery has been getting a TON of exposure, it's exciting. It was posted to Digg.com and got front page and made sooo many news sites. Isn't that great?

[juliegee]

The more one reads about all this, the more you see crossover from Dysautonomia and POTS.

How do you know you have CFS though? The symptoms are so similar sometimes.

Hi There-

Do a search on this site. The connection between dysautonomia & CFS has been discussed here many times. Everyone has slightly different criteria. Dr. Peter Rowe, my son's physician, was among the first to uncover the connection with a 90% correlation.

Also, look at the article Ana posted above. That site has a section for patient resources that outlines CFS diagnostic criteria.

Julie

[ramakentesh]

But Streeten and Bell where the first - suggesting as many as 90% of their CFS patients had some form of orthostatic intolerance.

This has got a lot of air time - and hopefully it leads to something. There have been however many false alarms in the science of 'CFS' in the past. Lactic Acid as a test etc.

[juliegee]

But Streeten and Bell where the first - suggesting as many as 90% of their CFS patients had some form of orthostatic intolerance.

This has got a lot of air time - and hopefully it leads to something. There have been however many false alarms in the science of 'CFS' in the past. Lactic Acid as a test etc.

Good to see that Dr. Rowe's studies found a very similar statistic and correlation between CFS and dysautonomia. How can you NOT be more tired when standing or even sitting upright is so taxing??? And, I agree, it is very exciting to see concrete testing beginning to be identified- woo hoo! Can't wait to hear more about this.

Julie

[Sophia3]

Bell & Streeten were the first, not Dr. Rowe. I just want to back that statement up.

Dr. Streeten came out of retirement to study with Bell...dr. Streeten was the FATHER of Dysautonomia studying it decades ago and writing a book. What he found to be fatigue from OR was accidentally being studied and correlated by Dr. Bell many years ago.

I got his book (Streeten's) 10 years ago from a hospital libray and skimmed it...interesting stuff...even tho written years before.

so sad he died soon after the first NDRF conference...THANKFULLY i have him on video tape. Sweet devoted man!

EDITED to provide this old link from 1997, gives brief history on Dr. Streeten.

http://www.anapsid.org/cnd/diagnosis/hypovolemia.html

[ramakentesh]

Now prostrate cancer - which is what XMRV was first found to possibly connected with - is often associated with abherant hypermethylation of promoter regions of certain tumour suppression genes. This is exciting for us because if XMRV has a causal effect in prostate cancer along this avenue then it would demonstrate a few things...

1. a second virus that is found to cause abherant epigenetic changes to human genes

2. one that appears related to chronic fatigue syndrome which is related to POTS and other forms of dysautonomia

3. provide a link to the theory that some forms of POTS are caused by abherant methylation of the NET gene promoter.

Cause, effect in one nice little theory - if XMRV is ofcourse found in POTS patients and a whole lot of other variables are met LOL.

[juliegee]

Now prostrate cancer - which is what XMRV was first found to possibly connected with - is often associated with abherant hypermethylation of promoter regions of certain tumour suppression genes. This is exciting for us because if XMRV has a causal effect in prostate cancer along this avenue then it would demonstrate a few things...

1. a second virus that is found to cause abherant epigenetic changes to human genes

2. one that appears related to chronic fatigue syndrome which is related to POTS and other forms of dysautonomia

3. provide a link to the theory that some forms of POTS are caused by abherant methylation of the NET gene promoter.

Cause, effect in one nice little theory - if XMRV is ofcourse found in POTS patients and a whole lot of other variables are met LOL.

Yeah, I was curious about the prostrate cancer connection. Does that mean that men with dysautonomia are MORE prone to getting it? Scary.

Julie

[EarthMother]

Since all the flurry around the XMRV "connection" ... I've done a bit more reading on BOTH sides of the research band wagon and some of the "anti-virus activists" have some interesting points to make.

Specifically they raise the issue of WHY so many illness are being linked to viruses these days? In their opinion it is because once a virus can be tied to an illness then the pharmaceuticals can get money to create a vaccine.

We've all seen a lot more vaccines come rushed to market, some would say the HPV shot came out too soon before it was fully vetted, or before we could actually determine if it DOES help prevent cervical cancer 20 years from now. Is it not interesting that they are only giving this vaccine to young people .... hmmmm, it will be years before we can judge efficacy.

I'm not saying all the virus news is smoke and mirrors, but just to take it all with a grain of salt when you follow the money back to see who is funding the research.

[dsdmom]

I've read a ton on this as well and am always so put out by any conspiracy theories about vaccines. That is just ridiculous. No doubt drug companies are in business for profit but before vaccines can emerge treatment options will be developed first. And isn't that what's important here?

Does anybody think HIV patients are worse off because drug companies got involved and are developing vaccines? I don't think so. They are being treated and that's what's important.

[ramakentesh]

Ive been talking to some people about this discovery. This could have more to do with us than people thought originally.

Many of the 200 patients tested had as part of their CFS presentations - autonomic disfunction including orthostatic intolerance and POTS.

Secondly, XMRV is a retro virus - there are only a few known and the others cause AIDS and Leukemia. So they are hefty viruses. The current hypothesis is that the virus may either supress or alter the immune system or the neurological system.

Other retro viruses are infact connected with abherant DNA methylation, implicated in POTs as well. This study could potentially be HUGE!!!

[firewatcher]

Ive been talking to some people about this discovery. This could have more to do with us than people thought originally.

Many of the 200 patients tested had as part of their CFS presentations - autonomic disfunction including orthostatic intolerance and POTS.

Secondly, XMRV is a retro virus - there are only a few known and the others cause AIDS and Leukemia. So they are hefty viruses. The current hypothesis is that the virus may either supress or alter the immune system or the neurological system.

Other retro viruses are infact connected with abherant DNA methylation, implicated in POTs as well. This study could potentially be HUGE!!!

OK, my question is this: Are certain people predisposed to this viral "trigger" (like those of us with migraines) or can anyone get dysautonomia/DNA methylation from the virus? Does every person who is infected have DNA mutation and if not, WHY not?

I don't remember a time when I did not have grey-outs or exercise intolerance, so I already had a pre-existing condition that would have made me "primed" or I already had the mutation as a child.(?)

[juliegee]

Ive been talking to some people about this discovery. This could have more to do with us than people thought originally.

Many of the 200 patients tested had as part of their CFS presentations - autonomic disfunction including orthostatic intolerance and POTS.

Secondly, XMRV is a retro virus - there are only a few known and the others cause AIDS and Leukemia. So they are hefty viruses. The current hypothesis is that the virus may either supress or alter the immune system or the neurological system.

Other retro viruses are infact connected with abherant DNA methylation, implicated in POTs as well. This study could potentially be HUGE!!!

I'm very interested & so glad to hear of your enthusiasm, Rama. I KNOW my immune system is impaired via blood testing, low IgG, IgA.... We're about to have my son's immunoglobulins tested too. It'll be very interesting to see if his immune system is compromised too. Most importantly I want to know if this is related in any way to the retrovirus. Can't wait till the test is available!!!

Julie

[iheartcats]

Ive been talking to some people about this discovery. This could have more to do with us than people thought originally.

Many of the 200 patients tested had as part of their CFS presentations - autonomic disfunction including orthostatic intolerance and POTS.

Secondly, XMRV is a retro virus - there are only a few known and the others cause AIDS and Leukemia. So they are hefty viruses. The current hypothesis is that the virus may either supress or alter the immune system or the neurological system.

Other retro viruses are infact connected with abherant DNA methylation, implicated in POTs as well. This study could potentially be HUGE!!!

I cannot wait! to have the XMRV test. I want to KNOW one way or another.

My PCP's office treats a lot of AIDS/HIV patients (full of literature on the wall) and we discussed this report. I'd do what I could to get in an anti-viral drug trial if I had the XMRV virus.

Is the test going to be standard that many labs can do? Is it just a blood test (I read it's about 6-months off).

And I would assume we could have a mutation that makes us more susceptible to this virus, thus POTS. It wouldn't be out of the realm of possibility.

[erik]

Does every person who is infected have DNA mutation and if not, WHY not?

I have no idea... but for very loose comparison it is interesting that there is a distinction between HIV infected status vs. having AIDS.

Another thing... I am unclear if the female:male ratio exists within the POTS population suspected of being post-viral in nature... or is it balanced in that population but incredibly skewed to female in other potential causes... such that the net ratio is 5:1, 6:1 or whatever the ratio is said to be? If this ratio is sustained within a post-viral or a retro-viral population... what is the explanation??? A susceptibility in women? An incidental protective factor in men? Are there men that are just as "sick" but it doesn't emerge symptomatically... like clamidia where men are often asymptomatic even though they're infected just the same. Or perhaps some similar but different diagnosis that pulls people to a different category/population statistically? I think the whole CFS/Fibro/POTS population is drastically female (same with lupus, Sjogren's, and others)... is this a clue to underlying suspected causes or pathologies? I've not heard any specific theories that tie that basic observation in to causes, have you all?

I have read that mitochondrial traits are passed from mother to offspring. This means mother to son, as much as mother to daughter... but the son would then not pass it on further. That does not explain a sex ratio, though, despite being sex related. But can give hints if familial patterns emerge that match this.

I think that things can come along and alter our DNA or trait "expression". So some might have genes sitting there, either dormant or working properly but still different than others. Then a certain retro-virus or whatever happens to come along and mute or activate these. Alternately, there are sometimes "protective" factors that could be involved... the lack of which would never be an issue until some thing or circumstance comes along and makes them necessary. Things such as this can potentially explain both "predisposition" and "viral/provocative agent/toxin" patterns.

Sorry for rambling without much insight... but these things always bring up more questions than answers until someone is able to piece the mystery together AND explain it coherently... and that is NOT me

[juliegee]

The missing link as to WHY women seem to be more affected....could have something to do with hormonal fluctuations. This is a dynamic factor that is understudied in general and certainly within this population. Since I've become peri/menopausal and have used a steady hormonal patch- I feel fab! Really so much better than when my hormones were changing every day.

Maybe men's steadier hormone load protects them from fully experiencing all of the dysautonomia symptoms- just a guess. Remember, my son is among those affected. He seemed fragile and had neurological and GI symptoms his whole life, but a VIRUS, during a huge growth spurt, set his dysautonomia off big time.

Wonder if it was XMRV????

[erik]

Perhaps I should give the birth control pill a try myself It would be a quandary if a doctor told me that they could cure my POTS but that they'd have to turn me into a woman then put me on birth control... at this point I'd say no, but if things got even worse maybe they could zap my memory or something so I didn't remember the prior???

Perhaps I should volunteer as an early "Male Birth Control Pill" fellow I think it's sort of out there, though not very popular, right? Thought I heard something about it. I'm mostly kidding, since I assume it wouldn't work in same fashion as female BCP. I came up normal for "Low-T" (testosterone) but maybe I've got fluctuating estrogen that doesn't belong (like a little hormone secreting tumor or a prolactinoma or whatever)... or perhaps a tiny steady dose of androgens would be worth experimenting with... my testosterone might be normal but in flux, and helped by supplementation. I think "hypothalmic" damage is a decent hypothesis for me, and that does happen to tie in to regulating almost everything in the body hormonally.

I have to admit that some of my "concern" over the sex ratio dilemma stems from the implicit insult to my manhood Mostly it's a "scientific" curiosity... but there's always a potential Freudian underlay! On the other hand, it's a good excuse to hang out with all you ladies here!

[juliegee]

Perhaps I should give the birth control pill a try myself It would be a quandary if a doctor told me that they could cure my POTS but that they'd have to turn me into a woman then put me on birth control... at this point I'd say no, but if things got even worse maybe they could zap my memory or something so I didn't remember the prior???

Perhaps I should volunteer as an early "Male Birth Control Pill" fellow I think it's sort of out there, though not very popular, right? Thought I heard something about it. I'm mostly kidding, since I assume it wouldn't work in same fashion as female BCP. I came up normal for "Low-T" (testosterone) but maybe I've got fluctuating estrogen that doesn't belong (like a little hormone secreting tumor or a prolactinoma or whatever)... or perhaps a tiny steady dose of androgens would be worth experimenting with... my testosterone might be normal but in flux, and helped by supplementation. I think "hypothalmic" damage is a decent hypothesis for me, and that does happen to tie in to regulating almost everything in the body hormonally.

I have to admit that some of my "concern" over the sex ratio dilemma stems from the implicit insult to my manhood Mostly it's a "scientific" curiosity... but there's always a potential Freudian underlay! On the other hand, it's a good excuse to hang out with all you ladies here!

Ha, Ha, Eric. My son feels the same way. he briefly joined DynaKids for support and came away with: "It's all GIRLS- What's wrong with me???" Another funny story. Our insurance co. allowed him to have zofran for nine months when his nausea symptoms were the worst. Then, they inexplicably refused to approve it. When queried, the insurance rep. said "Hasn't Mackenzie had the baby yet?" MACKenzie was a 12 y/o boy at the time. They had assumed the vomiting was the result of pregnancy!!!! He was so insulted. To add insult to injury, EVERY doctor we saw on our road to diagnosis laughingly suggested Mack was suffering from "morning sickness." He barfed and felt awful every morning & then improved as the day went on. I think his manhood is stigmatized for life

We're glad you're here, BCP and all

Julie