Skip to comments.Chronic-Fatigue Link to Virus Disputed
Posted on 06/30/2010 9:26:42 PM PDT by Seizethecarp
Two groups of researchers studying a potential link between chronic-fatigue syndrome and a virus called XMRV have reached contradictory conclusions, according to people familiar with the findings.
One group found a link, and the other didn't.
Their reports were held from publication after being accepted by two science journalsa rare move that has caused a stir among scientists in the field.
Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paperthat XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients.
The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal. She had no further comment.
Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn't find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation.
Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.
(Excerpt) Read more at online.wsj.com ...
Thanx for this interesting story.
There are probably a variety of reasons why people have dibilitating chronic fatigue.
Immune dysfunction with viruses, low seratonin, underactive thyroid, etc..
People that truly suffer from this ailment, whatever it’s cause, will always be plagued by hypochondriacs and fakers that want to join their ranks.
In my opinion, xmrv IS the cause.
Just like MS, pain can be a huge part of CFS. “Fatigue” is a misnomer.
CFS has always been a diagnosis of exclusion...all other explanations, such as you suggest, must be excluded.
Now for the first time an actual positive test for the XMRV retrovirus has become available and will screen out other causes of CFS.
How did you overcome it?
Back in the old days, we just called it ‘sick and tired’.
Any competent physician can screen out the hypochondriacs.
Interestingly, CFS sufferers have been proved in controlled studies to be resistant to the placebo effect. IOW, when you give them the sugar pill there is less improvement than with other conditions.
The crackpot UK psychiatrist who has been trying to prove that CFS is psychosomatic for decades set up a study anticipating that CFS sufferers would have a greater than average response to placebo psychiatric treatment, but his own study proved the opposite!
XMRV was only discovered in 2006 and was only linked to CFS in 2009. “True” CFS has long been suspected of being a post-viral syndrome. It is a lot like a bad case of the flu, which is way beyond merely being sick and tired.
Comedians will miss CFS if it is proved to be caused by XMRV, a retrovirus like HIV.
I have suffered from fatigue for longer than I can remember.
As a teen, I once slept for three days, only getting up to visit the bathroom.
I could do the same thing now except ‘now’ I have responsibilities.
Endless testing has never found a reason for my always being tired.
I can’t attribute it to CFS simply because I have never had any pain which seems to be one of the signs of CFS.
At 58 years of age .. I am resigned to the fact that I will Always be this way.
I had the same experience from around 1986 to 1989. The fatigue was horrible, joint pain, etc. I was referred to an infectious disease specialist and his conclusion (on non-conclusive evidence!) was that I had CFS.
Now I just blame my fatigue on turning 50. That period in the 80’s was NOT a fun time in my life.
“In my opinion, xmrv IS the cause.”
But what if a person has all the symptoms, but doesn’t have xmrv?
Actually if a person is tested positive for xmrv, they might be one of the lucky ones, if there is a good treatment for it.
“Now for the first time an actual positive test for the XMRV retrovirus has become available”
That is very exciting and hopeful, indeed.
Actually it is fibromyalgia folks who have the pain, as well as fatigue, so you might have CFS.
Have you ever tried an alternative doctor?
Are you going to take the XMRV test?
“Comedians will miss CFS if it is proved to be caused by XMRV, a retrovirus like HIV.”
And so will many doctors who say it’s psychological.
I had CFS in 1990. The fatigue was horrible. Had to go back to bed after taking a shower. Could sleep anywhere.
My regular doctor recommended that I see an Internist who just joined the practice. After a 5 minute interview, he concluded that my problem was psychosomatic and prescribed Prozac. I didn’t sleep for three days.
My wife, who happened to be a psych nurse, exploded at the internist and demanded that he provide her with a specific rationale for prescribing an anti-depressant when I was not suffering from depression, only fatigue. He withdrew the prescription.
The truly bad part of my CFS is that it led to neurocardiogenic syncope, which I still suffer from.
I’ve had so many different doctors and test in my life-time that I have given up.
Want to hear what the last and greatest reason for the fatigue?
This one given by .. another specialist!!
Because my mother was 12 at my birth and because I was a preemie .. I Lack .. ‘Something”!
Not sure what it is but Definably .. “Something”!
It is kind of like fibromyalgia, I think many of the people diagnosed with it are truly in pain and sick and then there are those that the Drs. just give them that diagnosis to placate them.
I think they should look into a vitamin D defiency for Fibromyalgia.
I think SOME doctors’ egos tell them, if they can’t diagnose the problem, it must be psychological. Grrrrrrr.
I was reading about psychiatrist giving people with CFS anti-depressant meds to “cure” them, but they at least they finally admitted that since the patients did not improve, their condition must be PHISIological.
“Not sure what it is but Definably .. Something!”
Please don’t give up totally. My bro had it, and got over it in around a couple of years, and I have it (for more than 10 years), and while I still am not well enough to hold a job, I’m far better, and have more and more great days.
I took some detox and that helped me somewhat, or maybe I would have improved anyway. Who knows? :)
If I test negative for XMRV, then my CFS will most likely convert to primary progressive MS, according to my neurologist.
If I have XMRV, then the antiviral cocktails that have already been shown to be effective on HIV are already showing positive effects with CFS in new studies that are just coming out. No need to wait for ten years of animal studies!
As far as I know, I have suffered with it for ‘fifty eight’ years now.
I can count on “two” fingers the days when I’ve actually felt like a Normal and happy person.
I gave up long ago.
Fibromyalgia (FMS) has a sharper more localized pain. My wife has it, and there is overlap with CFS as the Canadian Criteria for both syndromes best describes, IMO.
CFS has the “bad flu” kind of aching and progressively severe muscle stiffness, depending on the individual. I take 10mg of backlofen (a drug mostly used for MS but also CFS) four times a day to allow me to walk and move and I still have spasticity that greatly limits my mobility.
CFS also often has progressively severe orthostatic intolerance, which is intolerance of standing even briefly or for sitting for more that a few hours without needing to lie down. The intolerance to upright posture takes the form of either hypotension or much less frequently hypertension, as I have, followed by neurocardiogenic syncope (blood pressure drops suddenly causing loss of consciousness).
For the first five years or so that I had CFS, I really wasn't in conscious pain very often as long as I paced myself, but in the most recent five years the stiffness and fatigue and need to lie down every few hours makes you want to cry sometimes just from frustration at not being able to function.
A key part of the orthostatic intolerance is pooling of blood in the lower body and poor return of the blood to the heart which has been associated with CFS. This causes painful discomfort from just sitting upright for more than 15 minutes, say in a restaurant, which I can't do anymore. Air travel or even extended car travel is out of the question. I must sit with me feet elevated all day to avoid increasingly intolerable discomfort.
So while most of this doesn't qualify as “pain” it causes my day to be oriented around avoiding severe discomfort and staying awake as long as possible between obligatory naps...
Yes! I take D3 in a 2000 IU dose every day. No more fatigue. No more high blood pressure.
Because my skin is so fair (genetically a redhead) I can’t go out in the summer sun from 10am to 4pm. During the winter I take 4000 IU of D3 to make up for the loss of natural sun exposure.
It has made a HUGE difference in my life.
I have been diagnosed and disabled by Fibromyalgia and inflammatory arthritis (both every bit an exclusionary diagnosis as CFS) for 7 years now. While it is often just localized pain, it can involve my whole body for months at a time, to the point of being bedridden or in a wheelchair.
Point in fact: Western medicine has no clue.
I am made immensely better by a combination of Native American (Salish, Cheyenne, Ojibwa) medicine and Christian prayer/fasting with the use of anointing oils/essential oils. I am now some 5 months into recovery - sustaining mile long walks and beginning to recover hand-eye coordination. My wheelchair gathers dust in the basement. Recovery is long and hard, but there is definitely a light at the end of a very long tunnel.
To those in pain: Seek God first for healing. None can fix you better than He who holds your blueprints. Thereafter, the common sense of native healers (*not* new-age BS) and natural oils and plants for the issue of long term health.
Western medicine is great if one needs something cut off or bolted back on, but it is a loathsome trap for long term healing when the cause is beyond it's means.
Also suffer from fibromyalgia here. I live near a fibro study center and often get paid to be in their ongoing tests. One of the best things that they have found so far is mild to moderate excerise. It has made a tremendous difference in me along with trying to eliminate as many preservatives and addictives from food as I am able. I can tell when I get too busy for my 2 mile walks, or I eat too much junk food or processed food.
If interested, the best guidelines for following a fructose-free diet are found at websites dealing the hereditary version of fructose malabsorption, (or: FM) --- but for the total elimination of fructose, research HFI - that is, "hereditary fructose intolerance" which will give guidelines for a fructose-FREE dietary regimen.
have you considered a sleep study?
“If I test negative for XMRV, then my CFS will most likely convert to primary progressive MS, according to my neurologist.”
If that’s the case, a lot of us might be in trouble. I would surely get another opinion.
I got mainly Vit. C IVs which helped for awhile, but then did not.
What is in your antiviral cocktail?
I only said that there is research being done which has shown a favorable response with CFS for HIV retrovirals, not that I am on them.
Retrovirals are very toxic and while life-saving in HIV and potentially restorative for CFS, they are not to be taken lightly or in a mad rush. CFIDS advocacy/research group recommends against CFS folks taking retrovirals at this time pending more solid research.
IIRC something like 20% of CFS folks “convert” to an identifiable disease over time. Fatigue is a presenting symptom for lots of illnesses.
In my case, my spasticity which has responded to baclofen is what points to possible PPMS, a form of MS which on onset after age 50 is equally occurring between males and females and has all negative lab and clinical neurological tests until the disease is quite advanced.
Could your illness simply be some kind of sleeping disorder?
Please don’t let a disability stop you from being happy. Just don’t set your goals higher than your energy level allows. At the beginning of my CFS, I was so weak that when I was home alone, a huge spoonful of peanut butter was my lunch, because that’s all the energy I had to eat or fix a meal. But I tried to accept it, and was happy, with some thanks to talk radio to pass the time as I rested in bed, and much thanks to God.
Wow, it sure is complicated, and some of your symptoms, I have not heard of as being connected to CFS. CFS seems to be a catch word for different symptoms. I read the symptoms for CFS, and I think I had them all, and the only pain I had was from the flu-like symptoms. The fibromyalgia folks I talked with seemed to have all the symptoms I had, plus MUCH pain.
There was a time when I could not do the laundry at all, and then when I improved, I would put the dirty clothes in the basket, then REST, put the clothes in the machine, then REST and maybe even take a nap, and then hang the clothes on hangers. Does that sound like your energy level?
Thankfully I’m far better in the summer so can catch up some.
I prayed for you, and all of us.
“Western medicine has no clue.”
So I have discovered as well.
When you mentioned antiviral cocktail, I thought it was some kind of vitamin cocktail because that was the only one I heard of for CFS.
Ping... (just in case you are interested!)
CFS is very complicated indeed. I can’t tell you how many times I have had a new symptom and thought I finally had something that would distinguish my condition from CFS (giving me a “respectable,” treatable diagnosis) only to find that it was yet another symptom associated with CFS.
Check out the Canadian CFS diagnostic criteria, which is preferred by many experts and used in many scientific studies:
The Canadian FMS diagnostic criteria are also excellent:
I suspect that chronic fatigue is one of a number of related auto-immune problems associated with either a *lack* of parasites, or a problem with the intestinal flora.
The problem is that the human immune system has a relationship with both parasites and our intestinal flora, forming a triangle of interactivity. This is called “Helminthic Therapy”.
For example, it has been learned that Crohn’s Disease responds very positively to pig whip worms, because the immune system can turn on itself in the absence of this class of worm. When worms of this class are introduced, the immune system normalizes.
Likewise, severe asthma can be very responsive to common hookworm.
Making matters far more interesting, the human intestinal flora, which is between 300-1000 different species of microorganisms, which varies considerably between people, is interactive with these parasites and very directly to the human immune system.
This is why looking at a complex syndrome like chronic fatigue as caused by just a single virus can be very misleading. The age of simple causes with simple solutions is behind us.
Thanks for the ping. Fascinating thread.
“I suspect that chronic fatigue is one of a number of related auto-immune problems associated with either a *lack* of parasites, or a problem with the intestinal flora.”
CFIDS agrees with you that this is important. One of its six currently funded research areas has to do with determining whether CFS folks have abnormal “intestinal microbiota.”
This is discussed in the Feb 18 powerpoint presentation here:
It is not unfair to say that we, as in humans, are more microbe than man. But the little we know of what this entails is very interesting indeed.
When infants are born, it is about two weeks before their immune system is operational, and it is during that time that they develop the flora that will remain with them for much of their lives.
The flora significantly improves how we digest our food, but it can also inhibit our digestion, and physical development. The majority of the microorganisms are viruses, and the majority of those are bacteriophages, that infect both the helpful and harmful bacteria in our bodies.
The majority of the bacteria, 99%, out of an enormous field of bacteria, is limited to only 30 or 40 species, each vying with the others for space. The multiple antibiotic resistance staphylococcus is often one of these, and only becomes a problem when we take antibiotics that inhibit its competitors. Then it has a population explosion, and we develop a dangerous infection.
The important point is that we didn’t “catch” it from somewhere else—it was just waiting for an opportunity.
Parasites are likewise interactive with our flora, sometimes needing chemical markers from the right kind of bacteria to signal their eggs that it is time to hatch, for example.
And from there it gets positively odd. More advanced microorganisms, such as protozoa, are known for being able to make neurological changes in the brains of the animals they infect.
The protozoa that causes toxoplasmosis in many mammals, including humans, modifies the brains of mice and rats to be attracted to the urine of cats. That is, the protozoa makes them suicidal, so they will be eaten by a cat, and spread the protozoa to the cat.
While this has a profound effect on the brain of rodents, as many as 11 million Americans are infected with this protozoa. And the brain of a rodent is not that different from the brain of a human, relatively speaking. So what would it look like if a protozoa took over a human brain?
Importantly, this sort of thing is not unique to that particular protozoa. Other microorganisms can have equally profound effects on the behavior of higher animals. Including humans.
But we know little or nothing about this potential, scientifically.
It gets better. Our bodies are not limited to viruses, bacteria, fungi and protozoa. We even have arthropods living on us. Parasitic mites that mostly live in our eyelashes, called Demodex. Even larger are the body lice and even ticks that may have a strong interaction with our immune system.
BREAKING: CFIDS Scientific Director, Suzanne Vernon slams CDC study as apparently intentionally designed NOT to detect XMRV!
Suzanne D. Vernon, PhD
The CFIDS Association of America
July 1, 2010
Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the journal Retrovirology titled, Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Blood samples from people with CFS, matched controls and 41 healthy blood donors were tested for antibodies to XMRV using a western blot assay and for XMRV DNA using a nested PCR assay. Three independent laboratories, including the retrovirus lab at CDC, Blood Systems Research Institute (BSRI) and the Robert Koch-Institute lab tested coded samples. There is no doubt of the technical competence of these laboratories to conduct these assays to detect XMRV antibodies and DNA. So why wasnt XMRV detected?
If the rate of XMRV in the healthy blood supply is 0.1% (or 1 person out of 1000), then there is a slim chance of detecting XMRV DNA among 41 healthy blood donor samples. So, no surprise there.
What about the CFS cases and controls? First, I would like to make a request of all authors of scientific papers please provide a table that describes the subject and sample cohort! Combing back and forth in a paper to figure out who is who and what is what is frustrating! From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS. Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.
Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this werent bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple this was a study designed to not detect XMRV using a hodge-podge sample set.
Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.
HHV-6A infection induces expression of HERV-K18-encoded superantigen
"The human endogenous retrovirus K-18 (HERV-K18) encodes a superantigen that causes deregulation of the immune system. This provirus is transcriptionally silent, but can be induced by EpsteinBarr virus (EBV) infection and IFN-α treatmen" --Albert K. Taia, Janos Lukab, Dharam Ablashic, Brigitte T. Huber
As we have since the Lombardi study was published in October 2009, the CFIDS Association of America has actively promoted studies that seek to validate and confirm the association of XMRV in CFS. We are working with several investigators who have studies under way. Publication of study data in top-flight peer-reviewed journals is essential to advancing our understanding of the role that XMRV plays in CFS, and we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible. The Lombardi paper was reported to be under review for five months at Science, and its important to recognize that top journals enforce tight requirements on their authors.
Last weeks unauthorized report about the NIH/FDA study by a news agency in the Netherlands disrupted steady progress being made toward publication of the data. In response to a report in the June 30, 2010 issue of the Wall Street Journal, Dr. Harvey Alter issued this statement last evening, transmitted via the NIH Office of Communications and Public Liaison: “Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy.” According to John Burklow, director of the NIH Office of Communication and Public Liaison, these additional experiments were a condition of acceptance by the journal, Proceedings of the National Academies of Science USA (PNAS), and may take weeks to complete and review. Mr. Burklow is confident that the results will be published, and stated that all the collaborators are working expeditiously, but carefully, to ensure the accuracy of their results and the manuscript. The CFIDS Association has confirmed that additional reviewers for the paper were recruited as recently as two weeks ago.
The CDCs paper published today in Retrovirology was submitted to the journal on March 26, 2010, and accepted and published on July 1 after undergoing final scientific review by CDC scientists. According to Joe Quimby, senior press officer at CDC, additional assessment was performed after the paper was originally submitted as part of CDCs commitment to ensuring the accuracy and relevancy of the scientific information it reports. He noted that the paper published today is the same as the original submitted manuscript. No changes were made to the CDC paper authored by Dr. William Switzer, et al.
Thank you for the ping.
Thanx. I’ll check out those links.
So much great info. here. I’m going to save the link to this thread in my personal files for future reference.
Coincidentally today is a great day for me, and I did a lot of work! Am I finally cured? Of course, I’ve had days like this before, only to be disappointed later, but in any event I’m grateful for the day(s), and maybe this time it will stick.
I went to an alternative doctor, who is also a board certified M.D., and he gave me homeopathic antiviral meds - the first one he gave me didn’t work, but maybe this one is the answer (after taking it for around 5 months). He also gave me thyroid medication, which a test showed I needed, and other supplements. Here’s hoping.