Sufferers of the baffling ailment known as chronic fatigue syndrome, take hope: For the first time, there’s good evidence that the symptoms aren’t just in your head, and experimental treatments may be coming soon.
Over the past few decades, the syndrome has been a source of intense frustration both to patients diagnosed with it and doctors who try to treat it. The diffuse collection of symptoms can include incapacitating fatigue, muscle aches, headaches, problems with concentration. Doctors, meanwhile, have been mystified by the cause of the symptoms, and some have suggested that it’s a psychiatric problem, leading to the coining of the dismissive label “yuppie flu.”
Now, researchers report that 68 of 101 patients with the syndrome, or 67 percent, were infected with an infectious virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected. Continuing work after the paper was published has found the virus in nearly 98 percent of about 300 patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the paper [The New York Times]. While it hasn’t been proven that the virus causes the syndrome, the link opens new avenues of research and treatment.
The study, published in Science, notes that XMRV is a retrovirus, like the HIV virus that causes AIDS. As with all viruses, a retrovirus copies its genetic code into the DNA of its host but uses RNA — a working form of DNA — instead of using DNA to do so [Reuters]. Only last month, the same retrovirus was found in men with aggressive forms of prostate cancer.
The XMRV retrovirus was discovered in the blood-borne immune cells of the patients with chronic fatigue syndrome; Mikovits says she has a “gut feeling” that it’s the cause of the disease, but acknowledges that it’s too soon to say. XMRV could also be a relatively harmless “passenger virus” that simply takes hold in people with suppressed immune systems, or it could be a pathogen that acts in concert with other viruses that have been implicated in the disorder by previous research [Reuters].
One of the next steps is to experiment with treatments. Mikovits said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat HIV infection — to see whether they could help patients with chronic fatigue. If the drugs work, that will help prove that the virus is causing the illness [The New York Times].
Regardless of what researchers ultimately determine about the syndrome’s etiology, the findings are definitely good news for those diagnosed with the ailment, Mikovits says. “I can’t wait to be able to tell my patients,” says Mikovits…. “It’s going to knock their socks off. They’ve had such a stigma. People have just assumed they were just complainers who didn’t handle stress well” [Nature News].
Related Content:
80beats: Could Prostate Cancer Be Caused by a Sexually Transmitted Virus?
Discoblog: What’s in a Name? Real Diseases Suffer from Silly Name Syndrome
Image: Whittemore Peterson Institute
October 9th, 2009 at 3:47 pm
I pray that this is it. How can I be tested?
October 9th, 2009 at 10:02 pm
Please tell us how we can be tested. Our daughter and I have been afflicted for years.
We are so thankful for this news! I hope it helps us…
October 9th, 2009 at 10:28 pm
Mikovits says she has a “gut feeling” that it’s the cause of the disease, but acknowledges that it’s too soon to say.
This sentence really summarizes the article well.
October 10th, 2009 at 9:52 am
How about testing all men who have had early prostate cancer (I was only 56 and mine scored a 6 on the scale for which 7 would have meant they wouldn’t have done surgery since it would have been assumed that it had already spread past my prostate); and I’ve wanted to be able to determine a cause for my chronic fatigue syndrome for 40+ years. Physical fatigue I can handle; it’s the inability to concentrate that is debilitating. (I might add that physical fatigue is handled by the release of nor-epinephrine which gives a rush but leaves one more exhausted in the time following.)
Unfortunately the 3% of the population who don’t seem to have the syndrome will bolix up the test, since there will be more false positives than there are true positives.
And there isn’t much one can do about the DNA already written into our genomes.
Plus, they seemed to have tested the blood rather than tested for retrotranscription. I.e. My dad probably had a milder case of CFS than I. So I may have gotten the genetic load plus more retrotranscription from subsequent infection and proliferation of real viruses and amplification of the stuff in the genome already. Plus they should have tested the 2% without the virus in their blood to see if it was permanently stuck in their genomes instead.
Plus how about other ailments in the 3.7% of non CFS ? How many are considered depressed? You gotta figure that since 40% of the population is depressed at various times in their lives that at least some of the 3.7 don’t match CFS but have or will match the criteria for depression. Plus the mechanism for my fatigue is akin to the photo-phobia of some migraine patients (a level of tri-cyclics that treats migraine gets me out of bed but does nothing for the photo-phobia nor inability to concentrate (and anti-depressant levels make me sicker)); so how about getting the rate for various kinds of migraine sufferers–particularly photo-sensitive ones?
October 10th, 2009 at 2:19 pm
Hi I am a doctor and smarter than you, with CDC guidelines for CFS testing. First- get up! Next walk to the door, come on you can do it. Now walk, run, ride, swim, jump, or skip for 20 minutes with the sun on your face. Just 20 minutes! Now walk to your frige and cabinets. Throw out all of your fructose, and white flour based foods and drinks. Yep, there’s a lot of crap in there. Ok, next, throw open your curtains to let that light in. Finally, take your TV and unplug it. If you can do that, you pass! Now get back in that kitchen and make me a sandwich!
October 11th, 2009 at 3:19 am
upstairs,
I have done the above. For years, and still had the symptoms of CFS. My mother has some serious food restrictions (no sugar except a small amount of natural sugar from fruit, no wheat, nothing bleached, no milk, no food coloring, etc.) so through high school I ate the same way. I still had the same health problems that I had before, and that I do now.
Thanks for the self-righteous rant, but you’re an a**.
October 11th, 2009 at 10:53 am
Would someone please explain “upstairs medical school Says”. Is he/she being serious or sarcastic?
October 11th, 2009 at 2:56 pm
You know… they could rename Alzheimer’s as ” Forgetful old people’s syndrome” and recommend lifestyle changes such as doing crossword puzzles, eating a lot of fish and taking ginkgo biloba. (”Hey it couldn’t’ hurt.” “They must not want to get better”.)
Not to trivialize the effect that Alzheimer’s has on people and their families – but it would be a very cost effective solution (to insurance companies and to others that do not want to address the costs of treating illnesses) to trivialize it, pass the blame onto the individual and frustrate them out of the medical system.
Can they please *finally* change the name of this illness!!!
If they have finally found a retro virus as a marker for CFS – the next frustration will be trying to explain to people that they are not in danger of catching my “imaginary” disease
October 11th, 2009 at 5:35 pm
some people are just jerks and should be ignored.
this is great news for sufferers. there is nothing worse than feeling bad, unless you try to tell people and no one believes you. i saw a news story about this condition years ago and felt so much empathy for people who were suffering without being able to find a cause. i hope this information leads to a cure or at least managed care. best wishes to everyone in this article that faces CFS everyday. there are some of us out here that support & care for u!
October 11th, 2009 at 5:40 pm
I have had this rediculous illness for 21 years and in all of those years I have felt like I had the flu ranging from mild to severe every single day for 21 years! For 21 years I have been eating only healthy home cooked organic foods and taking vitamins and walking daily not to mention yoga, meditation, detox tonics and you name it. AT this point in my life I am almost 50 years old and I look like I’m about 32 from eating like a health nut almost my whole life BUT I STILL HAVE THE FLU… for 21 years I have had the flu and at this point I would like to take a doctor by the neck and beat the living s**t out of him, and any other doctor who dared to insist that this was all in our heads. I can not go near any doctors anymore because I have such severe anger from the way we all have been treated. To be honest, it was doctor arrogence that made us suffer for this long and delayed the treatment. The healthcare in the US sucks to high heavens and I hope that this finding will lead to the needed changes in the way we approach diseases and sickness.
[Moderator's note: edited the cuss word.]
October 12th, 2009 at 4:43 pm
Hello. I truly am a doctor–a real one. Whoever upstairs is, this person demonstrates cockroach level empathy and execrable ignorance of the nature of scientific inquiry and methodology. Of course, were he to be an MD, he or she was never trained to be a scientist in school and probably never undertook the requisite study to understand the training received at more than the rote level.
(Special note to upstairs–part of this response was in the subjunctive mode. I wonder, why?)
October 13th, 2009 at 2:44 pm
just a thank you to fat — what a nice little note you left; it feels good to hear that once in a while :)
October 14th, 2009 at 10:49 am
i suffer occational fatique/depression sort of mix.when exposed to aquiring money it fades.also when exposed to massive fear, it dissapears however both are hard to maintain
October 14th, 2009 at 1:06 pm
Hi everybody, I’m Dr. Nick! I too went to upstairs medical school. After short course I have degree on wall! I make a lot of monies from people to tell them what they want me to say. Baby has flu? Here’s antibiotics! Got bad headache? Here’s antibiotics! Antibiotics pay for my BMW!
I don’t make troubles by telling patients hard things like diet and exercise. I make easy times by telling what they like!
Only few people have chronic fatigue syndrome. I make my own name. Can’t Fake Situps. Now we can all have CFS!
October 14th, 2009 at 7:57 pm
So many diseases have gone the way of “it’s all in your head”, only to eventually have the mystery solved. CFS/Fibromyalgia/ME is the latest to be nearing vindication, but years after so much damage has been done to so many people.
Of course, Lyme Disease is another. Doctors are finally recognizing it, but still so many do not accept “chronic Lyme”. So a little more to go on that road. Again, at a huge price for the victims of this disease.
And finally Morgellons – when will this group of people finally get validated and treated? Their condition has got to be the worst of all.
October 17th, 2009 at 8:51 pm
YouRang said: “Physical fatigue I can handle; it’s the inability to concentrate that is debilitating.”
Just a guess, but if you have no post-exertional malaise (severe physical fatigue lasting for days to weeks) then it’s highly unlikely you have CFS/ME.
All those other test subsets you mention will no doubt be done at a later date.
Finally, while you may have had this for 40 years, plus your father as well, that doesn’t necessarily mean it runs in your family (although it could have). It may mean you were both exposed to heavy metals, mold, pesticides or other environmental toxins that contributed to your illness.
Regardless, my sympathies go out to you. You are a courageous man for dealing with this for so long.
Kelly