OVERTAKING CHRONIC FATIGUE: An electron micrograph shows the XMRV retrovrius in the blood of a patient with chronic fatigue syndrome.
Image: WHITTENMORE PETERSON INSTITUTE
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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.
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69 Comments
Add CommentAnother example of where Dr's need to start taking time to listen to their patients and stop assuming everything they can't explain is a mental health issue. Their ego has become a mental health issue and harmful to our well-being.
Reply | Report Abuse | Link to this@rshoff: What do you mean? CFS hasn't been labeled a "mental health issue". Quite the opposite. Patients only get diagnosed with CFS when doctors have ruled out other diagnosis by many tests. I wouldn't blame the doctors for not finding a retrovirus such as this!
Reply | Report Abuse | Link to thisobviously you have never been sent to a psychiatrist because it is all in your head, and have the psychiatrist say it is all depression. i finally got a real diagnoses of Lyme Disease after 7 years of CFS, its all in your head, and it is just depression.
Reply | Report Abuse | Link to thisFinally a partial answer for an illness that robbed 10 yrs. of my life. It's as real as they come folks. The name is a big problem, this illness was the sickest I have ever been. Period. I never dreamed you could get that sick for such a long period and survive. Kudos to these scientists for their work and lets hope for more of the same.
Reply | Report Abuse | Link to thisCFS patients should also look into CPN bacterial infection (chlamydia pneumoniae, which causes pneumonia - which should NOT be confused with the sexually transmitted chlamydia trachomatis).
Reply | Report Abuse | Link to thisCPN bacteria, which was only identified in the mid 1990's, is present in MS, CFS, rosacea, arthritis, alopecia and a host of other diseases formerly thought to be autoimmune in nature.
It's easily treated by long-term application of three common and cheap antibiotics, but you can't treat what you don't even know you have. Hurrah for the scientists who are discovering these bugs; many lives will be salvaged as a result.
I am so happy for all of us with CFS, that doctors are talking about how real this issue is, and maybe, just maybe some of us can come out of hiding, quit trying so hard to act normal, and love and accept ourselves and know we are ok as is. We have done nothing wrong, are absolutely worth loving, no matter how many times, is too many times, of being sick.
Reply | Report Abuse | Link to thisI agree wholeheartedly that ME, CFS, Fibromyalgia and even so called degenerative diseases like MS, Alzheimer’s and Parkinsons may ALL actually be caused by or a result of a long standing bacterial / viral / parasitic infection, AND/OR a build up of toxins (heavy metals, parabens, chemicals etc) in the body.
Reply | Report Abuse | Link to thisThe debilitating pain and fatigue felt in patients with these diagnoses (along with other, varied and numerous symptoms) is real, and often missed by GP’s and passed off as psychosomatic, or “in your head”. There needs to be more education in the medical industry and bacteria needs to be taken more seriously as a causative agent of many “diseases” which have been named after the person who discovered them, as these very “diseases” may actually not exist!
The immune system certainly need to be boosted and kept at its prime in order to avoid disease. This allows the body to fight off hostile bacteria; which some may argue actually "mould" the environment within our bodies to suit them...thus changing and invading cells...which may or may not cause them to mutate...causing...cancer? Is bacteria actually the main cause of disease and illness?
Are ALL these "diseases", actually, caused, directly or indirectly, by bacteria, virus’ and toxins?
This research is very welcome and I hope will inspire people to donate to those research charities that fund biomedical - not psychosocial - research into this awful illness.
Reply | Report Abuse | Link to thisThe one thing we have with ME/CFS is strength in numbers - small donations from millions of us will add up to a lot, but are we all donating?
In the UK last year, the government funded no biomedical research into ME/CFS and biomedical research charities such as ME Research UK and the Ramsay Research Fund received only �0.4 million in donations. Cancer research receives literally over a thousand times as much.
Please give to these charities or their US equivalents (google and you'll find them). In the UK there's a fundraising campaigan called "Just Four Quid" (google!) that offers moneysaving tips to help you save to give to ME research. Even if you have a low income you can afford to give a bit!
There's no research without funding, as SciAm readers will know!
My younger brother was diagnosed with CFS back in the 80's while working on his PhD. I was diagnosed in the early 90's following an intensely stressful 2 years. My younger sister was diagnosed with CFS at about the same time and was diagnosed with Fibromyalgia about 2 years ago.
Reply | Report Abuse | Link to thisIf this new information pans out and effective treatments developed, you know there are at least three people who will be grateful.
Next research will show the part that single-strand RNA plays in all of this. I know researchers who have spent years studying this mutation and are convinced that this bugger is the source. At this point I would like to be excited but even this exhausts me.
Reply | Report Abuse | Link to thisA male born in 1936, I contracted CFS in 1977, following a bout of 'flu' and have lived with & generally managed it since. What's intriquing is that I was hospitalized for an unknown illness about 1969, which was later reported to me by the Oregon state lab as a 'rare monkey virus.'
Reply | Report Abuse | Link to thisNowhere have I seen a mention of Post Polio Syndrome. There are lots of us around who had polio 40 or more years ago and now are experiencing debilitating late effects. Has anyone included the polio virus in their studies? Symptoms of CFS and fibromyalgia are very much the same as those of Post Polio Syndrome. According to what I have read Post Polio Syndrome is a R/O for CFS. Polio survivors spend their whole lives trying to look normal and hate to admit when it all starts catching up with them.
Reply | Report Abuse | Link to thisI may be wrong but I heard the testing has already become available at a lab in Reno, NV. Is this correct? I think the company is called VIP DX or Redlabs or something....????
Reply | Report Abuse | Link to thisI am excited that they may have found what might be causing my chronic fatigue syndrome (CFS). However, what about the other one third of the patients with CFS that didn't test positive for the retrovirus? They still have CFS. There is still a lot more research to be done.
Reply | Report Abuse | Link to thisSome of my doctors implied that all my symptoms might be helped by seeing a mental health professional. All the medical/blood tests that they did came back normal. Are they going to tell me I don't have CFS, if I don't test positive for XMVR? Something to think about.
Yes, it is always associated with a mental condition.
Reply | Report Abuse | Link to thisDoctors just don't care any more. They "look" at you differently when there is CFS, or ME, the more appropriate British diagnosis. Doctors have charged me a psychiatric fee when I cried for feeling tired so much. I can never let my guard down.
Reply | Report Abuse | Link to this
Reply | Report Abuse | Link to thisThis is a real proof (though extremely late) of Dr. Royal Rife's work 60 years ago.
Not only he knew that severe chronic illnesses are caused by viruses he found an easy and safe method to kill these viruses and completely cure terminal cancer and other severe illnesses.
http://northerntruthseeker.blogspot.com/2009/09/retro-virus-linked-to-prostate-cancer.html
Rifes frequencies are also available for immediate use www.healtone.com
This is a real proof (though extremely late) of Dr. Royal Rife's work 60 years ago.
Reply | Report Abuse | Link to thisNot only he knew that severe chronic illnesses are caused by viruses he found an easy and safe method to kill these viruses and completely cure terminal cancer and other severe illnesses.
http://northerntruthseeker.blogspot.com/2009/09/retro-virus-linked-to-prostate-cancer.html
Rife’s frequencies are also available for immediate use www.healtone.com
Expert commentary on this story has appeared on the ME Association's website today. Go to MEAssociation[dot]org[dot]uk, click on the "News" button in the left hand menu and find it posted on October 14. Well worth a read and spells out what research will need doing - their Ramsay Research Fund is actively looking for XMRV research proposals to fund, as is ME Research UK (who will also be publishing their own expert commentary soon on their site, according to the fundraising "Just Four Quid" blog).
Reply | Report Abuse | Link to thisWe need to support this research with donations!
I have been ill for five years and cannot find a doctor who understands anything about this disease. I applied for S.S. because I can't work and the judge's expert witness (doctor) said I probably had CFS and Fibro and would miss three or more days of work a month. The judge still denied my case. I cannot going on feeling like this. Can anyone out there recommend a doctor in the Los Angeles area? My e-mail is dolcezzala@mac.com
Reply | Report Abuse | Link to thisThank you kindly.
I don't know of anyone in LA. But, my best suggestion would be to go to a doctor who is maybe one-two years out of medical school. They seem the most willing to listen and accept that what you say is true.
Reply | Report Abuse | Link to thisEven those only ten years out ignore patients with these problems, or at least that was my case.
Unfortunately, three or more days is just not enough for them. They want you to wait until you can hardly function and then make you wait forever for hearing after hearing. I know they are trying to weed out those who are not really sick, but I haven't worked in over two years and since I have no health insurance (my husband is retired, so I can't get any through him and NO insurance companies will insure me, even when I tell them they will NEVER have to pay for my preexisting) we are very close to bankruptcy.
Just keep trying, you'll find someone to really listen. It won't mean you'll get well, but you'll get some relief and you'll feel better just knowing someone believes in you
Good luck!
I know. I can't let my guard down around my family and some casual friends. It's like if I have a good day, well, I'm good to go forever.
Reply | Report Abuse | Link to thisI keep how I feel physically and emotionally very close to my vest. My husband, a sister, and two or three close friends are the only ones I can confide in.
I thank God I found a family physician (after five years of crawling up the stairs when I came home from work, a filthy house, etc, etc) who listened to me and believed me.
Unfortunately, he first sent me to someone (a rheumatologist) who supposedly was the "go-to" guy for this (ha!) and then to someone who actually knows what he is doing and believes me and cares.
I still have a filthy house and have difficulty with even getting a shower, face washed, etc, but I know I have people on my side.
Someday, hopefully, I'll finally get disability (hopefully before we go bankrupt.)
In the meantime, hang in there everyone.
I have been diagnosed with prostate cancer and for atleast 10 years I have all the signs and symptoms of CFS.
Reply | Report Abuse | Link to thisI have both pc and cfs and so far no doctor has connected the two.I need to explore the connection so I can give my drs. a new direction
Reply | Report Abuse | Link to thisI
Reply | Report Abuse | Link to thisMy symptoms began in 1975. Over the next 15 years, and many visits to 12 doctors, these were the responses I received in order: "Why do all you women look for the most exotic diagnosis?" "Please don't question me about possible illnesses. Your job is to answer my questions; I come up with the illness." "There is nothing wrong with you." "Go home and flush your Elavil down the toilet. The fact that it enables you to sleep at night is a placebo effect." (Waving my blood test results in my face) "If I received this good a test on all my patients I would go home every night a happy man." "Have you looked at the fact that you might be an unhappy person?" "Are you telling me I'm the SEVENTH doctor you have been to?" "There is simply nothing in your results that explains what you are describing." "I can't help you; you need to learn to live with your chronic condition." "Three children would tire anybody out. Do you get enough rest?" "Let's talk about your life. Are you active in your community and church?" None of the above doctors made a diagnosis. In 1989 I was diagnosed with Chronic Fatigue Syndrome. I then saw yet another rhumatologist, but this one had been trained in Europe. He listened to my history and said, "The pattern you have described is not consistent with psychosomatic illness. Has anyone ever tested you for Lyme Disease?" They had not. When I had asked about the possibility of Lyme Disease was when I got the "women and exotic diseases" response and that shut me up for the next 10 years. By this time I had Fibromyalgia as well as CFS. I was then tested for Lyme and the tests were positive. I was treated off and on for the next five years, responding at first and then relapsing, but never relapsing to the point where I had begun, which was some help. I do not live in some rural area far from medical expertise. I live in the NYC Metro area. I hope all new information gets into good hands and reaches all the people - the quiet as well as the vocal - who need help.
Reply | Report Abuse | Link to thisIt took me nearly 10 yrs. to get the right diagnosis. Lyme disease. I with you on this one!
Reply | Report Abuse | Link to thisAnother Lymegirl. It took me nearly 10 yrs. to get the proper diagnosis. I completely understand.
Reply | Report Abuse | Link to thisI have been wishing for a cure.
Reply | Report Abuse | Link to thisI have CFS/Fibromyalgia-Ebstein Barr/herpes
First,thing I was going threw a bad divorce.... I got herpes simplex from a partner in 1976 & three years later,in 1979 I came down with CFS
I had gotten a bad painful "BAD" period. I was feeling sick & I fainted & I started to break out in huge hives.
A friend took me to emergency. Hives lasted 2-3 weeks with dizzyness,this "drunk"like feeling,is 24/7. This drunk feeling is all the time. Sometimes it goes into vertigo. I don't drink. I don't have miners disease.
Thirty years is a VERY LONG TIME. I was 33 now 63 yrs. old.
Doctors did send me to shrinks,& told me it was all in my head.
I have spent a fortune on doctor's threw the years,including
Holistic, including accupunture.
I have low thyroid,diabetes. Easily to get cold with bronchitis. Four to six times a year.
It's time for a Cure. I would give anything for Good Health that would be my Lottery,not money.
God Bless us all.
Oh, I can't believe I have now come across someone else who has this awful dizziness 24/7. They sent me to shrinks because I kept saying I was overwhelmingly dizzy all the time - almost impossible to do anything. I gave up work, driving, etc. I had it for four years without any relief but also with other symptoms like severe migraines and muscle pain and fatigue. Now 5.5 years on they have identified I am actually ill with thryoid problems, deficient in nutrients, autoimmune antibodies, unexplained viral like outbreaks from time to time. I take it much easier now, gave up drink and eat a restricted diet as a lot foods and medicines trigger my dizziness and migraines.
Reply | Report Abuse | Link to thisDanielle, 30 years is a long time and knowing what that dizziness is like on a daily basis, you are a true trooper to still be demanding this be given some attention.
We still have a long way to go, but I am grateful for this tiny piece of the puzzle found recently that may help those of us with CFS and other "invisible" illness/disease. I have been sick for about 9 years, first told it was thyroid problems (even though my levels were normal, I had dense thyroid growths removed). Six months later after a bad flu our whole family had...I crashed and lost my job, unable to think, work through pain and debilitating weakness, etc. Had to give up driving 3 years ago after dizzy spells and lost memory and foggy thinking. The past year has been spent mostly in bed after the worst 'relapse' in all these years. Insurance wouldnt allow out of network visits, but we finally bit the bullet and went to see if other docs had answers. I was found to have Lyme, the very illness my docs THOUGHT I had in the first place after that dreaded flu virus. I have been told, and see in other publications that this may be quite a collection of bacteria, virus, fungus, toxins, etc we are dealing with. When your body is littered with this garbage, it just allows more and more "IN" to take over. Thanks to savvy science researchers who care to find new answers and not place us on a shelf like our docs like to do (out of desperation or maybe some despair in not being able to fix us). Putting us on a shelf and stuffing us with medications might help some, but covers up the real problem....something is THERE destroying us one day at a time. Often docs miss other NEW health issues because they KEEP us on that shelf and want to say EVERYTHING is from the CFS/Fibro, etc. I am so grateful for any new scientific proof. If they find the cause, they might be able to head this off for the future generations and even be able to help those of us suffering in defeated silence...
Reply | Report Abuse | Link to thisBless you all out there hurting and those trying so diligently to help. Wish we had the money to donate for better research...we know our government isnt doing much for us...
I suffer from the symptoms of CFS. I have had a negative Lyme's disease test. I have been told that it is possible to be falsely negative. Has anyone out there who ultimately had a positive Lyme's test, had previous negative results?
Reply | Report Abuse | Link to thisI find it encouraging that there's finally some progress on causes & ID markers for CFS. I've had severe episodes of these symptoms in years past, but it seems to flare up only occasionally now (or maybe I've just become acclimated to it).
Reply | Report Abuse | Link to thisOver the past 20 yrs, I've queried my various GP's about CFS, adding that I wasn't trying to claim a "trendy" disease, just trying to find an explanation and some help. In each case, the response has essentially been 'we'd have to test to eliminate all other possibilities first', so I let it go. It eventually occurred to me that in each case, my GP at the time was in a PPO network and would therefore be taking a business risk to initiate testing that the insurance might refuse to cover. Well, that's what I've concluded anyway. I think they were just being tactful about declining to take it further.
I have personally heard our present company health insurance rep speak disparagingly of people claiming CFS as if such folks were a bunch of flakes. Makes you wanna punch this guy out. Well, maybe if you had the courage and the muscular strength...
I know. The fatigue is real. The muscle pain is real. Let's hope the health industry in general will come to accept a bonafide test for these symptoms.
To me the virus that causes CFS seems to have a similar mechaism to the virus that causes AIDS, HIV. It taxes the immune system which makes the individual tired and I suspect it (CFS) is repicating in the areas of the body where discomfort is felt as the immune system attacks the cells with the active process of reverse transcription. To this end, literally the HIV virus makes the CD4 cells tired and sick.
Reply | Report Abuse | Link to thisI have come to the conclusion the medical profession is more like a religion than a science. This is probably due to the massive sums of knoledge that must be mastered to acquire an understanding of medicine, but this understanding is blinding their eyes to practice and preach what they have learned. There seems to be a resistance to new lines of thinking or comming up with new ways to explain the unexplained. There is a balance between worshiping the wisdom of old and opening your eyes and seeing what is before you using new methods of microscopic examination.
Reply | Report Abuse | Link to thisI have no problem at all attributing my chronic pain and fatigue to mental health issues, and the antidepressants I take have done a far better job of improving these symptoms than anything else medical science has to offer.
Reply | Report Abuse | Link to thisPsychosomatic symptoms are not "all in your head", they can have very real and measurable effects on physical health. They cannot be wished away by willpower or positive thinking and do not mean you are just "crazy" or "neurotic".
Mental illness is as real as physical illness, and needs to lose its stigma so that people are willing to consider treatment of what may well be the underlying cause of a great deal of physical pain and fatigue.
Mental illnesses affect the brain directly, and cause disturbances in mood, cognition, sleep, and many other things, which then cascade into physical ailments. I chose to explore medical treatment for a genuine medical condition, and that's done far more for my quality of life than endless hours spent in chat rooms and support groups of like sufferers looking for any treatment except one that may actually improve their lives.
Alas, part of the whole problem with mental disorders is that the people with the disorders refuse to consider mental health treatment and resort instead to years of pursuing ineffective treatments and quack diagnoses.
As a nurse anesthetist in the early 80's working in a childrens hospital before the days of gloves, I was exposed to all kinds of bugs and germs. I got very sick that year. I've always known it was a virus, I could tell when it was going to act up, my head will tingle, I get flu like symptoms and then get really sick, and then it will be sometimes 3 months before I have a day I feel half-way decent. I got tired of the doctors telling me of course I was tired, I was in a stressful profession. But others didn't get so sick and tired. I got tired of them calling it depression too. I just quit going to them. Thank goodness someone is still trying to figure this out. I'm 56 this year, I've dealt with this for 28 years now. I've never given up that the body can heal, and that I will be able someday to live the life I want to live, go hiking, and skiing and bike riding and dancing.
Reply | Report Abuse | Link to thisI have to totally agree! Thank GOD! That the Medical Profession will NO LONGER have the psychiatric profession to lean on when they do not know what is wrong. Or they have passed there twenty minute allotment mark for patient care. They can no longer blame depression, anxiety, or it's all in your head as the excuse! Thank you so much, to the team that will help set those of us who have to silently suffer disability with the face of normalcy just for the egos of those that cannot see the zebra's among horses.
Reply | Report Abuse | Link to thisi was told so many times that it was all in my head..sent to depression...sadness...all i needed was a good job and a good man, which my primary care Dr. told me!!! even after i've been diagnosed with lyme diease ,herniated discs , goiters on my thyroid by several different doctors...My primary care doctor stil insists that the pain and tiredness and memory loss is all in my head! i dont kno where to go from here. I no longer have medical, i lost my job 2 years ago due to depression. If i have this retrovirus/cfs...it would definitely in some wierd way make me feel better, especially since i would now know its not all in my head..My primary care doctor enen diagnosed me in 1999 with fibro...apparently he has forgotten all about that diagnosis!
Reply | Report Abuse | Link to thisDr. Oz discussed this retrovirus/CFS connection today on his show. It's about time the med. folks take it seriously. I am diagnosed with fibromyalgia/CFS, but have seen Drs. who deny the very existence of either. I've been told to "get help" - meaning see a shrink; I've spent years on anxiety/depression drugs and now heart meds for palpitations; Doctor have rolled their eyes at my symptoms and questions. Thirty plus years ago I was told, "Mrs. M...., You're just going to have to live with some discomfort." Discomfort? Ha! Try debiliting pain, fatigue and brain fog. You never learn to "live with" it.
Reply | Report Abuse | Link to thisMaybe now, we will be taken seriously and helped. Dr. Oz said that viral meds already exist that may help.
I have stumbled upon a mineral supplement that will kill a retrovirus. I too have suffered for years and been ignored my medicine. I am in my second week of taking it, and so far I feel so much better. check out www.mmsdr.com
Reply | Report Abuse | Link to thisI have no connection to this product or site. just found it.
You obviously have not been on the diagnosis treadmill of CFS. After 10 months, and enduring the disgusted glances of doctors who couldn't pin down my disease, I journied to the Mayo Clinic, where I received my diagnosis. Still, upon return to my local physicians, I was rebuffed. Please, don't defend the egos of doctors. I languished with kidney cancer for 8 months, being told I was "too young" to have something as dire as my symptoms suggested and sent to a psychiatrist. Lo and behold, I finally had a doctor go the extra mile. I lost my kidney, but kept my life.
Reply | Report Abuse | Link to thisIt's sad to see so many people frustrated people with CF and/or fibro. I first got sick in 1989. went in the hospital in April 1990 for two weeks. Was tested for hepatitis A, B, non-A/B or C, Lyme, arthritis, lupus, gall bladder blockage, rabbit fever, and a jillion other diseases, with a total of NO positive results. My joints, especially hands and feet, were so swollen I couldn't bend my fingers or put weight on my feet. My knees and neck were stiff. The pain was excrudiating and the amount of aspirin they gave me made me deaf!
Reply | Report Abuse | Link to thisWhen I checked myself out I was still running a low grade fever, but they were doing nothing but checking on me now and then. My short term memory was so bad that I couldn't remember the clue on a crossword puzzle as long as it took to count the number of squares, and vice-versa.
My Dr. of 30 years made no effort to get me into IU medical center or a large teaching hospital. Months later he gave me a phone number to call at Mayo, but didn't offer to help me get admitted. I fired him.
When I went back to work 6 weeks later, I had to teach myself my job. I had forgotten the processes. I called myself the "working dead". Being single, I had to keep my job and my insurance.
A Dr. at Barnes Hospital in St. Louis diagnosed my fibro and Cleveland Clinic verified it and suggested I might also have CFS. Neither could offer any help.
Retired, today I live my life in 4 hour segments. That is as long as I have to stay on my feet and accomplish anything before crashing. Four hours is about how much sleep I get at a time. I do not apologize to anyone for not taking part in events or anything else. Explaining is a waste of energy I do not have. They do not want to listen, anyway.
This is the most positive news I have had in years. Hopefully the cost of the XMRV test will come down and an anti-viral treatment will be developed as quickly as the shot for the H1N1 Flu.
I have refused to donate blood for for fear of infecting someone, as HIV was unintentionally spread years ago. Nice to be vindicated.
My current Dr. thinks it is brain chemistry, but Savella is a nightmare. You are distracted from the CFS/fibro by the headaches, sweating and depression brought on by the medication.
"Dr. Oz said that viral meds already exist that may help." The key word is "MAY". Let's hope they can "tweak" some of them and hurry the process. We need it.
I sounds like you have Lyme disease--the negative test means nothing. Fibro is a wastebasket dx.
Reply | Report Abuse | Link to thisPost43--Xhausted,
Reply | Report Abuse | Link to thisYou probably have Lyme disease--a "negative" tests means nothing.
Fibro is a wastebasket dx.
Fibro should not be a "wastebasket diagnosis". It has specific criteria for a proper diagnosis & simply labeling a condition that defies a specific diagnosis, "Fibro" is doing a disservice to that patient & those who have been properly diagnosed. I received my diagnosis of Fibromyalgia from a rheumatologist based on that criteria nearly 4 years ago.
Reply | Report Abuse | Link to thisI was lucky, I had a health professional suggest that I should be seen by a rheumatologist to rule out Fibro, so while my health has been a challenge most of my adult life, I received a diagnosis less than a year after my health took it's worst nose dive & only a few months after beginning the "poke & prod" process of figuring out what might & might not be wrong with me.
I've had various people in my life be incredibly understanding & others who were insulting about how the Fibro currently affects my life.
To the person who suggested that more CFS & Fibro sufferers should embrace the "mental disease" approach & take the antidepressants, I went that route & it did nothing....absolutely nothing for me. It didn't even help as a tool for coping with the emotional side affects of living with pain. I took both antidepressants & anti-anxiety meds both for a while & never felt any positive effects. So, for that reason alone, I stand with those that feel frustrated & angry at the "it's all in your head" attitudes that can come from some people. I'm glad that taking the antidepressants worked for you. I'm sure that it helps some, but don't assume that because it worked for you that it will work for most. I'm not exhausted & in pain because I'm depressed, but I can be mildly depressed when my pain levels are high. Music & meditation, time with friends, my 3 yr-old grandniece all do more for combatting anxiety & depression than any drug has, but they don't combat my pain & exhaustion.
This research & other research using special brain scans are starting to show true physiological differences between those with Fibro & CFS. I strongly believe that someday those that have treated people with these conditions as lazy, malingerers will have to apologize & that effective treatments will be found that will bring normalcy back to our lives, if not an out & out cure.
I haave been afflicted with CFS for approx. 12 years and have found that it is either unknown to, or denied by, most physicians. I am very interested in gaining access to the test for XMRV. When it becomes available, how will I know?
Reply | Report Abuse | Link to thisThank you.
I second that rshoff!
Reply | Report Abuse | Link to thisLymegrl is right, having an illness that is for all intents and purposes invisible, even to medical professionals, they will dismiss it as psychosomatic. Doctors do often have an egotistical approach to their practice. I can understand that, I would probably have a big ego if I spent all that time in med. school; nevertheless, it is a very rough road when you're sick and everyone is telling you that you're not.
Reply | Report Abuse | Link to thisWhen I saw this research discussed on a recent Dr. OZ show, I started to cry with relief. I've been suffering without a diagnosis for 15 years. Fortunately i have a good primary care MD who keeps encouraging me to see different specialists to get a proper diagnosis. When she doesn't like what they say, she orders the tests herself. That said, I feel worse each year and am wondering if anybody can recommend a good source of information or online support group? I'm not interested in complaining; just finding out if anything works.
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Reply | Report Abuse | Link to thisGordon Harman.
Re your recent article (Oct. 8, 09). For your info, I had Guillain Barre in July 1994. Afterward is when my CFS began. Any connection?? Thanks.
Could Guillain Barre have a connection to CFS?? I had Guillain Barre in July - Aug. 1994. Am now without any other residual effects. My CFS began soon after the GB. Any suggestions? Anyone else ith CFS have a history of GB?? Please comment.
Reply | Report Abuse | Link to thisI got MONO 7 years ago and I have not been the same. My TITHERS are through the roof. Is this what has caused my CFS? Please Help I am so sick of being sick and in pain. ITs a very dark place and NO its NOT a MENTAL issue.
Reply | Report Abuse | Link to thisFollowing ross river, glandular, brahms 17 yrs ago SEVERE pain and all the other, born celiac but didnt know it, took 13 yrs for a cfs/fms diagnosis, got so bad now with the mcs Im living in a car, cant go into a house because of the solvents etc, or the beach, my immune system just paks it in, when I finally asked for a virus check I do have pneumonia clymadia or this one youre talking of. What are the 3 cheap antiobiotics? I lie in a car screaming in pain all day, SO WEAK, I did find out finally on my own I have addisons so I can do something about that. Im probably never going to get better if I dont kill off these viruses. Im also poisoned with metals so also chelating (slowly) and trying to build up my bodys sulfur.
Reply | Report Abuse | Link to thisI agree with Lymegrl ordinary radical. A lot of us have experienced being sent to mental health people because the pain we feel must be in our head. Doctors have a very hard time thinking outside the medical books they learned from in school. Perhaps if it was a law that they all must be members of the AMA and take continuing education courses, it would be better for all of us. Especially when it comes to those who are responsible for keeping us healthy. I was a legal secretary for years and lawyers were required to go to these things every so many years. Why aren't doctors?
Reply | Report Abuse | Link to thisAfter nine years of chronic pain, blamed on osteoarthritis and fibro, I am convinced that my condition is virus related. I have aquired : zoster (chickenpox), HPV (diagnosed after finding out spouse was unfaithful), TB pos. (coworker-who infected around 50 people), and last summer Seedwarts (another form of HPV)Dr. says from shaking hands with someone infected. I don't shake hands or even hug people anymore. Now having flare-ups (flu-like symptoms, but no flu) about every 2 1/2 months, with physical manifestations after each. Muscle loss, bone loss, abnormal bone swelling or growth. Have one Dr. saying Lupus, another disagrees. Only agreement is some type of auto-immune disorder. I'm sure I'm not the only one praying these researchers can identify and tie this all together. It can't just be "all in everyone's head". Keep the faith.
Reply | Report Abuse | Link to thisIf a virus is causing this, wouldn't more people be suffering. What if there was something wrong with the nervous system that made people more susceptible to this virus? Migraines are a disorder of the nervous system. What if the treatment of migraines (addressing the nervous system) help chronic fatigue sufferers? http://www.themigrainedoctor.com
Reply | Report Abuse | Link to thisAs I have worked with patients, specifically in the treatment of migraines I have noticed an increase in energy from them. By correcting nervous system dysfunction we are not only seeing migraine symptoms reduced, but we are also seeing an increase in energy. Could we check for nervous system dysfunction in chronic fatigue patients also? http://www.themigrainedoctor.com
Reply | Report Abuse | Link to thisI had my blood examined years ago and it appeared exact- ly as the ones in the photo above. I used to have a very bad case of chronic fatigue but have improved to become functional. However, symptoms still linger. Attention deficit, lousy memory, food & chemical sensitivities and lethargy are constants. Is it possible to contact the researchers through this forum?
Reply | Report Abuse | Link to thisYears ago, I read the original study of CFS performed by a single doctor who, when he couldn't find a physical cause for the patients' symptoms literally and quite peevishly blamed it on depression. That "I know everything" attitude is endemic to the culture of physicians and blocks even the concept that new knowledge can exist. Highly frustrating.
Reply | Report Abuse | Link to thisYep, and according to DR.Mirkin (www.drmirkin.com), mycoplasms and eureaplasma as well. I used to live near/have access to a medical library. Dr. M. cites all of his research and this is definitely real. The only question is; Why are our immune systems so screwed up?
Reply | Report Abuse | Link to thisAnd if so, why are only some of the population affected? What triggers that? Genes, environment, poor understanding of science & its applications i.e. immunization... This last for instance may be the main reason for it, but since there is no research I'm aware of done on long-term effects (who would fund such research when the medical community would only reject it?) but there is even no proof that any of the vaccines we force upon the population work, work the way intended, and some evidence that they cannot even work at all in humans not yet eighteen months old.
Reply | Report Abuse | Link to thisYears ago, I knew someone who acquired a virus that took weeks of research to determine it was one that commonly struck only waterfowl. At age nine, he was given a vaccine incubated in a duck egg. Louis de Brouwer, a French doctor, scientist and researcher had been screaming for years that immunization policy was going to cause retroviruses, and a colleague of his found a link between vaccination and the AIDS epidemic and the current rise in leukemia in Africa. You see, in order to have the vaccines relatively fresh when administered and reduce shipping costs, vaccines are often produced locally. A common lab animal is the singe vert (translates into green monkey) in Africa. This particular species has AIDS naturally you see. Also, retroviruses have been produced in the lab using immunizations. I wish I could find an English version of this book which roughly translates into "The medical maffia".
Reply | Report Abuse | Link to thisCheck out your condition/symptoms at www.drmirkin.com. Dr. Mirkin is a rare (unique?) gem in that he is a doctor with the attitude that new things are being discovered all the time, is a speed reader and he cites his references. Ever hear of microbacterial infection? Check it out.
Reply | Report Abuse | Link to thisWell, it's been over a year since you wrote this, but check out www.drmirkin.com he has a link on his website for exactly this. Good luck!
Reply | Report Abuse | Link to thisSo, what has recently been done on this retrovirus? My daughter came back from Desert Storm diagnosed with Lupus and Fibromyalgia - what's the connection and who's doing anything about it? This story is more than a year old - what's happening now?
Reply | Report Abuse | Link to thisWhat new testing has become available - especially for Gulf War Syndrome vets. My daughter was in Desert Storm and has everything mentioned in these articles, including Sjogrens, Ranauds, and loss of strength in the extremities.
Reply | Report Abuse | Link to thisI was the first person in the USA to be granted disability for Fibromylagia-way back in 1993- a distinction I could really do without. I also, since then, have had it"suggested" to me my pain was physcologial and/or I was a hypercondiac. I even today still have difficulty with doctors understanding the pain i live with daily. And how bad it can get at tmes. I really have problems getting a good nights sleep, but thru trial and error, I have found that taking a Lunesta (sleep aid) and a pain med that I can actually most times manage to get 6 or so hrs sleep. Not always but 90 percent.;) I hope they do find some answers soon. It is not fun to have to live with Fibro and try to do the things you love.
Reply | Report Abuse | Link to thisDJ
Wow. A "psychiatric fee"?! You should talk to an advocacy group for Mental Health about this. It HAS to be considered a failure to accommodate a disability (and therefore contrary to the ADA) to be charged fees for having emotions! Nuts!
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