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 journals—a rare move that has caused a stir among scientists in the field.
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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 paper—that 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 ...
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”!”
LOL
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.
Thanks anyway.
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...
bookmark bump
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:
http://www.cfids-cab.org/MESA/ccpccd.pdf
The Canadian FMS diagnostic criteria are also excellent:
http://www.mefmaction.net/Portals/0/docs/FMConsensusDocumentbk.pdf
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