Retrovirus XMRV and Hope for Chronic Fatigue Syndrome?

I think i might have xmrv, but then again, symptoms are similar to lyme disease...which is hard to test for...I'm a Mom who is tired, achy, with brain fog, with 2 boys with issues one who has symptoms of ADHD and the other is diagnosed with low functioning autism and I also need to make a living...both my boys have allergies and bowel issues,,,it has to be related...I have a sister with fibromyalgia and a brother with asthma and allergies...we are the canaries, all with similar genetic predispositions and different manifestations depending on our own particular environmental triggers , genetics and timing of the threshold of both having been surpassed...I've done what I can so far, and continue to do all that I can...I have been done the autism stuff, the adhd stuff, the allergie stuff, done the diets, supplements and therapies..my older son is well for the most part as a result, my younger son really suffers, and I do as well...all of this is ENVIRONMENTAL illness, with genetic predisposition. I am all ears for anyone with answers...there is so much out there, but most of it out of reach in terms of money and time...both of which I'm so short of...if I could save my kids then I would have more time...but if I save myself I would have a better shot at saving my kids...there are only so many personal resources that any single person has...I realize that this site is about CFS, but maybe some of you have kids with issues too???
very open to what others have to say...
God Bless anyone who has environmental illness, manifsted as CFS or otherwise,.,,

Hi Anon - Thanks for your post, and I hope we hear from members who can answer your questions with real-world experience that adds to the conversation.

Here are a couple of resources that I thought would interest you. The XMRV Information Center has several posts on treatment and also offers a newsletter.

http://aboutmecfs.org/Rsrch/XMRVIntro.aspx

Jacob Teitelbaum MD, who researches treatments for Chronic Fatigue Syndrome and fibromyalgia, published the following on December 4, 2009:

http://www.psychologytoday.com/blog/complementary-medicine/200912/got-cfs-dr-oz-tackles-the-xmrv-virus

I will continue to seek information sources on this, and I'm sure Jody will as well.
Take good care,
Pat

I am ready for more answers sooner than later. Anyone know of any actual treatments for XMRV, or for that matter, how to get a doc not to look at you sideways if you ask to be tested for it...
I suspect that XMRV may have some relation to many other unexplained illnesses that are either judged and untreated or treated symptomatically without a substantial alteration in quality of life.
? how to get tested
? what is the treatement
? what natural treatments would be available now- have tried many
Retroviruses are tricky, I do go the natural route as much as possible, but don't know how effective a general natural antiviral can be with a nasty retrovirus...
HIV is a retrovirus...pretty well researched and there are meds that improve quality of life, anyone hear of someone trying HIV meds for XMRV?

Another great blog Jody - you just have a knack for making issues up close and personal - Thanks!

When I consider the fact that I have CFS, as well as numerous other issues, and my son has CFS and I truly think my daughter does as well, and I see that my cousin and her son have it, it makes my analytical brain start ticking. If in fact we have a retrovirus and it has changed our DNA and/or RNA, does that mean that our genes have also been changed so that we are in fact passing these illnesses on to our children? Now that's scary stuff!

I think we will hear more and more about this condition. I have CFS and FMS. It is life altering and debilitating. But, I guess there are worse things. I just keep plugging...water exercise is my best bet, but I also have PT 2xweek and try to get into the pool 3x week; stretches every day. Knee replacement is not too far away. When my daughters are exhausted, I worry that I've passed it on to them. I am still hopefull that a treatment will become available in the near future.

I read a few articles on the theory about the polio vaccine a couple of years ago. And I have also wondered if this could be what's happened to us.

Disturbing possibiity. Very disturbing. It would be nice to finally have some answers. We've all had so many unanswered questions, many of us for years. I'm really hoping we will be getting some solid answers soon.

The first 'real' news in 20 years since i fell victim to CFS in july '89; it's an incredible development. For 20 years i've been saying that what it will take to solve the mystery is for enough DRs and scientists to get CFS so they will 'get' that it's not psychological! Regardless if it's found as the CAUSE or a MARKER (which is a sure thing based on the 98% of cfs-patients with antibodies for XMRV), it's something solid that people can bite their teeth into, vs 'just guessing'.

Great article Jody! About 19 or 20 years ago Dr. David Suzuki's program, The Nature Of Things, I think it was called, did a segment on CFS. It was extremely interesting! They interviewed a doctor in Scotland who was doing research into CFS. That doctor discovered that, at that time, our "cluster" of symptoms had been on the medical books for over a 100 years. He also noted that historically, an outbreak of theses symptoms corresponded with an outbreak of polio within a given geographical distance. Based on this, and the fact that he noted significant similarities between the affects of polio and CFS, he decided to do further research into this matter. He did blood tests on patients in London, England who were still in iron lungs as a result of the 1950's polio outbreak. He then compared those test results with blood tests done on CFS patients, with some VERY interesting results. As should be expected, the polio victims' blood work showed the distinctive markings on their DNA for the polio virus. What was totally unexpected, however, was the fact that the same distinctive polio blueprinting was on the CFS patients' RNA. RNA, produces our DNA. Since the blueprinting image for each virus is unique, the question had to be posed as to why was the polio virus on the RNA of CFS patients? As well, why is this outbreak of what we now call CFS so widespread and at a time when polio has been all but wiped off the face of the earth? Unfortunately, this doctor's research was not well received in the medical community. Why, I do not know, when the facts certainly seem to speak for themselves.

Being a somewhat analytical individual, and certainly having a stake in the outcome of this research, I too have spent a great many hours pondering these questions. I keep thinking about a number of things. First of all, is the fact that this outbreak of CFS has been worldwide since the 1980's when it was called the Yuppie Flu. Then, I kept thinking about the fact that although many doctors didn't know what was wrong with us, they did seem to think that it was a retrovirus. As well, since the blueprinting on our DNA upon exposure to viruses is unique and distinctive for each virus, why would the identical blueprinting for polio be on CFS patients' RNA if we haven't had polio? Is it a coincidence that our generation is the first to be hit so dramatically with CFS, when there are no current outbreaks of polio, and when we were the first to be vaccinated against polio? Is it also a coincidence that they used live virus for some of those vaccinations? Was there a problem with some of those early live virus vaccines that resulted in the virus becoming a retrovirus in our systems and resulted in CFS? Well, these are some of the questions that I have been pondering for nigh onto 20 years now.

It will be interesting to see how things play out over the next few years. It will be interesting as well, to see if this doctor's findings are accepted by the medical community, or rejected in the same manner that the findings by the research doctor from Scotland's results were rejected by the medical community 20 years ago.

Let's hope something comes of this research that can make a real and lasting difference for those of us with CFS. And for people with other illnesses affected by the XMRV retrovirus as well.

We don't know ultimately where this research is going to take us but no matter what, I think we should use any means necessary to have hope. And there is reason to be hopeful this week.