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].
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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
December 29th, 2009 at 11:27 pm
Watch this informative video on XMRV
http://www.youtube.com/watch?v=HY5Ph_9pL5g
December 30th, 2009 at 8:37 am
before i had cfs i could out situp any doctor. i worked out for about six hours a day at the gym. i did cardio, muscle, and stretch trainings religiously. i also went to a top twenty school, have a masters level education, was an officer in multiple clubs and organizations, and i have worked after college doing high level political work for three different non profit organizations – one specifically involved community health. i campaigned in the most recent presidential election. until i got cfs. now i can’t even walk around the block. i have physical pain, nausea, migraines, light and chemical sensitivities, tremors, low grade fevers… you name it.
When i first got this illness i can still remember the first few hours… the worst nausea and shaking of my life … worse than any hangover in college…. i couldn’t eat for 12 days. i ended up in the hospital and they found nothing wrong… oh yeah my WBC was up but they ignored that. they gave me compazine, zorfran, finnegren, … nothing broke the nausea. they told me it was stress……….
that doctor was later fired.
as for the guy claiming to be a doctor… he’s probably a lonely teenager who wishes he could do situps. nobody with medical training questions the existence of CFS… at least no one that has ever done real science. i have worked in three physics laboratories… two in high energy physics. I also worked in two biology laboratories. statistically speaking you would have to be an idiot to not believe CFS is real. the recent article in science should sway even the dumbest of our nations medically illiterate. also… the WPI and National Institute of Cancer now are reporting the presence of the virus in 98% of patients.
yeah… go make yourself a sandwich you asshole… and choke on it.
January 3rd, 2010 at 12:54 pm
http://www.co-cure.org/Kerr-1.htm – Gene expression subtypes in CFS patients
http://www.ncbi.nlm.nih.gov/pubmed/19567398 – Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
http://www.medscape.com/viewarticle/574944 – Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases (includes CFS)
January 6th, 2010 at 2:19 pm
Hi, I have just found this site, very interesting, different opinions etc, but I HAVE CFS AND FRIBROMYALGIA FACT. It started when I was young, never feeling well after a childhood trauma, in my 20’s it was ‘just’ the CFS symptoms, there are so many, but in my 30’s got worse with terrible pain. I have tried everything and seen everyone and have been treated so badly by many doctors, but it was the same when MS was at this stage. I wonder if anyone knows if this retro-virus is linked to CFS sufferers only or Fibro too? (Or are they one and the same?!). It’s early days, but the possibilities are hopefull but frightening at the same time. My daughter is 23 at uni and is an all or nothing type just like me, or rather ‘was’ – she complains of feeling not right, achy and always looks so tired and I worry that she will end up like me. 48 and for the most part bed/housebound, despite trying to keep going and following all the PACING advice, quite hard for anyone without live in help?!! It’s so hard to remain hopefull, quite often I’m not, so will we ever have any kind of life again. It strips everything away from you even though it could be worse, couldn’t it? Here’s to HOPE!!!
January 9th, 2010 at 8:46 am
Am I the only one who finds the tone of this article irritating? There has never been any evidence that it is ‘all in the mind’. Nobody has called it ‘yuppie flu’ since about 1980. The writer of this article seems to have taken his research from the Book of Rubbish Medicine 1979 Yearbook.
We’ve been way past all this ‘yuppie flu’ rubbish for so long, yet here is again like a bad penny.
Incidentally I’ve had it for fifteen years, during which time it has improved a great deal. I was told it was constant exhaustion of the adrenal glands due to the virus interfering with the adrenal feedback process. The best thing to do was to do gentle graded exercise, constant relaxation and most important, refuse to acknowledge or worry about the symptoms as getting depressed and anxious just exhausts the adrenals further. This advice has proved very helpful, and I now live a reasonably normal life after being housebound for the first 5 years.
Good luck to everyone who has it and remember the key time is when you get symptoms – don’t worry, be happy, they’ll go away and they won’t leave any permanant damage.
January 9th, 2010 at 6:51 pm
To Steve: Your comment is optimistic for the most part. I am so glad that you are overcoming this through your own therapy. Being housebound must have been very difficult, so glad you are out and enjoying life again. I have a question: Does CFS/ME fluctuate in intensity of symptoms or does it escalate as time goes by and environment changes? I am new to this thing (approximately 3 yrs. diagnosed) and my symptoms fluctuate. I do know that any energy exertive activity has a reprocussive/delayed effect of loss of energy combined with concentration loss and now depression (Symptoms can last for days). I also want to know what qualities I should look for in a healthcare professional, i.e. compassion, therapy…is he/she really hearing my plight? I seem tongue-tied when talking with my Dr. and need to know how to prepare myself for the consult…Any help is appreciated.
January 18th, 2010 at 1:34 pm
Hi angiebaby,
I’m sorry you are struggling with the illness. It is quite normal for the symptoms to fluctuate, and the pattern you have described re exertion is absolutely typical.
Any decent doctor will know of the disease and the affect it has on people, and will understand if you are tongue-tied.
I don’t think you need a doctor though – apart from one thing. If you are experiencing depression, you must get on anti-depressants, as it is hard to recover if your mood is low and you are anxious.
I would try this – every day, walk for about a couple of minutes (or less if that seems a lot). Stick to roughly two minutes every day but don’t worry if you go a little above or below that level. Don’t do more if you feel well, or less if you feel bad. Just be consistent. If it is anything like mine, you’ll find that it gets easier every day, though there will be little patches when it gets worse again. Again, DON’T WORRY this is normal. When you are happy with that, do a little more – the absolute key is to be consistent and not to worry. Remember your adrenals are exhausted so depression, anxiety and worry will all produce more symptoms. The general negative feedback pattern you want to avoid is this -
exhausted adrenal – nervous system affected – various symptoms – worry about symptoms – adrenal exhausted through worry- more symptoms – more worry etc etc etc etc
That’s the pattern you have to break. It isn’t easy, but it is very possible – and remember, I had terrible symptoms at one stage, but now they are mainly gone and NO PERMANENT DAMAGE HAS BEEN DONE! In other words, symptoms are unpleasant, but nothing to fear. Good luck x