Fibromyalgia & Chronic Fatigue Syndrome Retrovirus: What the Discovery Means
The XMRV Discovery Series
When major news about a possible cause of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) breaks, it's definitely something to get excited about. However, we have to keep some perspective and remember just what these discoveries mean.
What we know is that a retrovirus called XMRV was found first in the majority of people with ME/CFS, then in the majority of people with FMS. (If you missed the news about this discovery, click here for more about it.)
Our excitement needs to be mainly for long-term prospects. Things like treatments, diagnostic tests and especially a cure are probably years away. It's a sad fact that research is slow, and that FMS and ME/CFS research is poorly funded -- which makes it even slower.
Putting It in Perspective
This is hardly the first time scientists have said, "Hey, this could all be linked to a virus." This isn't even the first retrovirus to cause a blip on the radar screen. However, the overwhelming percentage of us believed to carry this virus is staggering -- 68% in the published ME/CFS study, and as high as 95% of people with either FMS or ME/CFS in post-study work. (Scientists say they refined their testing methods after completing the original paper.)
In my mind, this study is one more solid piece of evidence that ME/CFS is immunological. It could also start changing the common view of FMS as a neurological or rheumatic condition. Still, for a study to have any real scientific weight, it has to be replicated. How many times has a single FMS/ME/CFS study pointed one direction, only to have the next one point the opposite way? This is a great first step, but it's only the first step.
Diagnostic Tests
When something is as pervasive as XMRV appears to be in us, it seems like a promising area for a long-awaited diagnostic test. However, XMRV is a recently discovered virus, and so far, there's no diagnostic test for it. The researchers who made this discovery are now working on a blood test for the virus. Once they come up with a test, its accuracy will have to be confirmed in other studies before they start trying to develop it for clinical use. That will likely take a few years, and even when it's available a positive XMRV test won't be a positive FMS/ME/CFS test -- XMRV is not unique to these conditions, and a small percentage of healthy people carry it. It's my personal opinion that we have more promising studies underway for diagnostics tests, especially for ME/CFS.
Treatments
The Whittemore Peterson Institute, which made this discovery, says it's currently securing funding for tests to see if drugs already on the market are effective at suppressing XMRV. IF they find one or more, it might be possible for some of us to start taking them right away. However, it'll take a few years for human tests to prove conclusively that they're safe and effective. If they DON'T find existing drugs that work, who knows how long it could take for someone to come up with one and get it to market.
A Cure
Of course, the ultimate discovery would be a cure. Keep in mind, though, that scientists used cautious wording about this discovery:
"These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS."
It's possible that it might contribute. They're not saying "cause." At best, it's a "possible cause" or "possible partial cause." We have a long way to go before anyone talks about curing XMRV infection, and before we know whether curing XMRV infection would cure FMS or ME/CFS.
Short-Term Impacts
This study does have some possible benefits in the short term.
- It may help convince your doctor that your illness is both "real" and "viral."
- It may help convince the CDC that it's dealing with an infectious viral disease and that it should spend its time and money differently.
- It may help raise the public profile of FMS and ME/CFS and educate more people about how serious they are.
I wish I could tell you that this was it -- that we'd have a diagnostic test out next week, treatments by next month, and a cure within the next 5 years -- but that's just not the reality. Still, this study could be a major key to solving the puzzle. It's a major discovery, and only time will tell how important it is to our health.
Also See: The XMRV Discovery Series
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Hi Adrienne,
After reading my post on your site, I had a long cry. Then, I remembered a fine moment from the first half of my life. I was not always this sick.
I have read about lots of promising studies and seen ads from those “special caregivers of the world” who will sell me a sure cure
You are not the first to think these diseases should be more expensive to society at large. Moved up on the menu, given more research, Cured dammit!
Some say the squeaking wheel gets the grease, others, the nail that sticks up from the floor is hammered down.
I am sure somebody will stumble upon something that helps us. But if anybody can help anybody, that is very special, too
I am also sure that these are not the last diseases that will ever be discovered.
People dying for no apparent reason is not news. Even if you remove war and crime victims from the list.
Thank you for building a useful and informative site.
BAWAP! (be as well as possible)
Al
Regarding a treatment, “…currently securing funding for tests to see if drugs already on the market are effective at suppressing XMRV. IF they find one or more, it might be possible for some of us to start taking them right away.”
At this point I really don’t care if a drug is proven to be safe. If there is the slightest chance that it may be effective then I’ll gladly try it.
What’s the worst that could happen?
1) Give me an illness that can be seen and thereby make me eligible to collect disability? That wouldn’t be so bad. At least I wouldn’t have to literally drag myself through every day pretending to be a productive citizen.
2) Kill me? How bad could that be? At least I’d be cured.
PWC – almost 25 years now. I want my life back.
XMRV is has been a common contaminant of cell cultures used in research and production of biological products such as vaccines. A friend of mine came down with CFS after a trip to Asia. He wondered if he got it from some exotic foods he had eaten on that trip, but now I do wonder about vaccine contamination. You normally have to have a series of vaccines to travel abroad to places like that.
http://shiningthelight.wordpress.com/2009/10/13/did-a-mouse-leukemia-virus-contaminating-vaccine-stocks-cause-chronic-fatigue-syndrome/
If fibromyalgia is in fact caused by the XMRV or any other immunological problem, it is vital that anyone who has fibromyalgia or CFS, do EVERYTHING they possibly can to increase their immune system functioning. This is where, for most people, serious lifestyle changes need to occur. No more excuses, or saying, “I do that.” Make those changes, although they may not be easy at first, and see some life come back into your life!
Fibromyalgia and CFS are devastating. We won’t be able to win every battle in finding the cause, a cure and ultimately, prevention, but if we stick with it long enough, we may be able to win the war! Stay strong and remember there are people out there on your side!
I look forward to seeing where this all leads to. Hope is ALWAYS a good thing. I think proving that us with these illnesses are carring around this virus will help fight the prejudice so many of us have experienced in the medical community. I had my pain management doctor tell me there was no such thing as fibromyalgia and insist I need a mental health exam. It is hard to find a doctor that wants to help me at all because I have fibromyalgia. If a blood test is developed I will love shoving the results in their faces.
Nothing worse than being in sick and in massive pain every day and having your doctor say,” I can’t help you.” I am doing everything I can on my own to feel better but wow, a caring doctor sure would be nice.
The research doesn’t explain however how some people have made good recoveries from CFS. Is this possible if a retrovirus is the cause?
Billy, if you listen to this interview with Anthony Fauci and David Ho that Charlie Rose did in 2008, you’ll see that there are some people that have HIV without symptoms. These experts admit they don’t understand why.
http://www.charlierose.com/view/interview/9861
The immune system is still a mystery in many ways. (And it looks like not all cases of CFS are testing positive for this virus, so if a cause at all, maybe it is not the only one that has these clinical symptoms.)
There was another animal virus linked to CFS back in 2006.
http://chronicfatigue.about.com/od/research/a/animalvirus.htm
They were going to do more research, but I haven’t heard of any followup.
“there’s no diagnostic test for it.”
So Why Tell Us about it???
FMS,
Why tell you about it, if there’s no diagnostic test? Would you prefer to be uninformed of promising research and continue to have doctors treat us like hypochondriacs and whiners? This could be life-changing research for millions of people, and if we have to wait awhile for a diagnostic test at least in the meantime we’ll have another direction to look for treatment, with hope of better things to come.
There’s no diagnostic test for any of the problems that plague us with these conditions, but the more we know about them the better we can manage our health and look for better treatments. Just because you can’t be diagnosed with this particular virus (yet) doesn’t mean you can’t take steps to improve your immune system, which may at least give you more good days and fewer crashes.
If we wait around for a diagnostic test and a cure, we’ll waste our lives. By using all of the information we have, we can make improvements in our health. That’s worth talking about.
Billy,
You ask a great question, but so far I don’t think anybody knows enough about this retrovirus to answer it conclusively. However, keep in mind that so far XMRV is being called a “potential contributing factor,” so if it is truly a cause, it’s not the only one. Perhaps a different triggering infection is easier for the body to defeat; maybe some people are able to develop an immunity; maybe XMRV can go into long-term remission.
Also keep in mind that with widely varying symptoms, poorly informed doctors, numerous definitions and no diagnostic test it’s very difficult to say whether everyone diagnosed with ME/CFS actually has the same illness. Some researchers working on genomic subgroups say they believe ME/CFS actually is an umbrella term for as many as 7 separate diseases.
Unfortunately, even big breakthroughs tend to raise more questions than answers.
I’m in a hopeful mood this week. So I am hoping you are wrong about how fast they develop a diagnostic test for this retrovirus. I would love to know my own results. I have always thought that I have some undiscovered virus. My regular physican told me one time I didn’t have Chronic Fatigue Syndrome, instead he believed I have Chronic Viral Syndrome. A couple of infectious disease docs and a few immunologists have labeled me CFS. It would be a relief to know what is causing this illness. If this retrovirus isn’t causing CFS, then we need to eliminate the possibility with diagnostic testing. Lets all hope that will be soon.
So if there is no diagnostic test for this, how did they conclude that over 95% of patients diagnosed with ME/CFS are testing positive for the XMRV virus?!?!?!
Bobbie Beck has a good question. I don’t know the answer either to it.
If anyone is in or around Southern California, there is an amazing, dedicated, understanding, and one of the leading Internal Medicine and Infectious Disease Doctors for Chronic Fatigue Syndrome in the nation. His name is Dr. John K.S. Chia, M.D.
His never ending ideas and years and years of research on this illness/virus(es) gives so much hope to me and the rest of his ailing patients. Right now I’m trying low dose Betaseron injections every other day and have tried other treatments before that, that have had good results in numerous other sufferers. It really seems to be hit or miss on the medications/herbs that each person tries, always depending on their individual health and family health backgrounds, severity of symptoms, other ailments/medications, and their unique (but faulty) immune systems… and I’m not sure about you, but I will try every treatment known, plus some, in the hopes of being close to, if not completely cured. That, or to at least know that my documented treatment trials helped in finding a cure to save so many others from going through this horrible and life-altering experience and nightmare that is Chronic Fatigue Syndrome and Fibromyalgia. Feel free to email me for the Doctor’s information or if anyone ever needs to talk to someone who very much understands.
search4cureCFS@aol.com
Thank you for doing all this research about the new finding.
It was very well done.
Adrienne, thanks for writing such a balanced and sensible article! In the midst of all the “cure!” and “test!” writing I was beginning to go mad with frustration – after the nth well meaning friend forwarded me XMRV information I wrote Does XMRV Cause CFS? to explain the difference between “correlation” and “causation”. You’ve chosen a different route with this article but the same “calm down and think…” type of writing is heartening to see. Thank you
r
Bobbie and pam: Because diagnostic tests that scientists develop in a research setting are not automatically approved for use in the general public. They have to go through extensive testing for safety, side effects, efficacy, etc. (and legal liability risks), like testing new drug compounds or vaccines. In other words, there are diagnostic tests for use in research settings already (obviously – the WPI scientists used several) but no diagnostic tests yet approved for testing the general public.
What if the retrovirus is a secondary infectious agent and not a primary cause. Does the research say anything about that?
Wondering,
I did some digging around on the 2006 research you mentioned, and found that while it did get some publicity it was never published. It seems to have pretty much faded into the woodwork.
Bobbi,
Very logical question! The kinds of tests they do in studies aren’t always 1-available and 2-realistic in a clinic setting. They of course do have to come up with a way to identify it for studies, but then they’ve got to figure out a practical and affordable way for testing labs to do it. I know — it’s frustrating that researchers can identify it and our doctors can’t! It doesn’t always make sense, but that’s the way it is!
Kaleb,
At this point, they just know it’s there in most people with ME/CFS. Now they have to investigate whether it’s a cause, predisposing factor, etc.
Adrienne – In reading about retroviruses, it also seems to have a genetic predisposition. In other words, it can be passed from one generation to the next. Is that your impression also? What angers me so much about this, other than the fact that FMS/CFS has been passed off as a psychological condition (mental health) is, my mother had this illness. I followed in her footsteps with the same symptoms as she had, beginning when I was in my 20’s. This just happened to take place after receiving the swine flu shot (which Ford insisted upon). My mother passed away from cancer in the mid 80’s. I have been ill for over 30 years and wonder if the same fate awaits me. I think the hardest part of the past 30 years is being treated like a hysterical woman with mental health problems, when I knew all along that my body was rebelling against me. The apathy received from “well meaning” doctors was shocking. To wait this long in order to be validated is pathetic and I don’t think anything can make up for the horrible treatment “we” (everyone with these diseases) have been put through.
P.S. In speaking about seeking an infectious disease specialist, my mother sent me to one when I was 18. They found “nothing” yet the breast abscesses I endured continued well into my 30’s (until surgery removed the tissue). Oddly, I have also had endometrosis and uterine fibroids (which seems to be common among women with FMS/CFS).
“The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates”.
This from the Whittemore Peterson Institute under ‘XMRV Research’ and then ‘Q & A’ .
If such a test can be constructed so quickly it’s likely that other commercial laboratories can come up with their own quite rapidly.
Dan
FibroFilly,
Yes — researchers do believe there’s a genetic component involved in fibromyalgia and chronic fatigue syndrome, but they haven’t pinned down exactly what it is. That could explain why some people carrying a particular virus react differently to it than most people do. These conditions so often run in families that it’s hard to imagine there’s nothing genetic about it. Several of them are working on it, though, so hopefully we’ll start seeing some real progress in that area before too long.
I sure pray that they do progress. After losing my mother, who suffered with the symptoms of FMS/CFIDS, and then with my health history…i’m so worried about passing it on to my child and my grandchild. It’s frightening to think this also could be a communicable disease. Then, there are the ramifications of all those who donated blood in the past, not knowing that they shouldn’t give….passing it by that means. We have an epidemic and it’s not the swine flu!!