One of the scientists behind the XMRV discovery, Dr. Judy Mikovitz of the Whittemore Peterson Institute, recently gave an in-depth lecture on XMRV and its implications for chronic fatigue syndrome, other neuroimmune diseases, and possibly XMRV-related cancers. She covered a wealth of information over 2.5 hours. Here's a look at some of the things she talked about:
- Studies of XMRV in Families. Researchers are looking at families with certain types of cancer and multiple types of neuroimmune disease (i.e., autism, fibromyalgia, chronic fatigue syndrome) and finding XMRV infections. In families with one person who has chronic fatigue syndrome, sometimes everyone else can be infected yet not sick. Some of these healthy family members appear to have high levels of antibodies to XMRV, which could help researchers develop treatments.
- Disease Onset. Dr. Mikovitz believes that people with chronic fatigue syndrome may have carried the retrovirus for years without symptoms. Then, a series of small events that weaken the immune system make the body unable to handle the XMRV and other infectious agents that aren't a problem for healthy people (Epstein-Barr virus, human herpesvirus 6, Lyme disease, etc.) She said, "Here you've got your immune system working well and the virus and the immune system are coexisting just fine and then some other other bug, whether it be Lyme, a flu, anything, gets you ... and then you've just tipped the scale to where your immune system can't handle [XMRV] or anything, and everyday you're seeing new infections."
- Diagnostic Tests. In the published XMRV study and post-study work, researchers used multiple tests to uncover the retrovirus. Not all of those methods are being used in commercially available tests, so Dr. Mikovitz says about 60% of tests could result in a false negative. However, she says positive tests are reliable.
- Treatment for XMRV-Positive People. While it's not advisable to take highly toxic anti-retrovirals without tests confirming effectiveness, she says some available therapies may help, including: immune modulators; anti-inflammatories , because inflammation activates XMRV; things that improve natural killer cell function; medications that help level progesterone levels, because progesterone up-regulates XMRV in lab tests; avoiding stress.
- Treating Co-Infections. Once we do have proven treatments for XMRV, Dr. Mikovitz says it will still be important to treat co-infections. She also says we need research on people with both XMRV and common co-infections to see what's different in each group.
- Early Intervention. Dr. Mikovitz says it appears that early infection (say, in children) can lead to more severe disease later on. She stresses that, as with HIV, early detection and intervention are important to keep viral loads from getting high. She hopes better diagnostic tests will enable us, down the road, to do away with the 6 months of illness required for diagnosing chronic fatigue syndrome.
Dr. Mikovitz emphasized how little we know for certain about XMRV. The chronic fatigue syndrome community has been here before -- hoping that an infectious agent will prove to be "the" culprit behind their illness -- but a key difference this time is the amount of interest it's generated in researchers worldwide. We should expect to see more XMRV news from the Whittemore Peterson Institute, drug companies, and other researchers in the next few years.
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i wish they would do something for the many people who have been living with CFS hell for decades. it’s great that they will have good treatments later on and that they have the interest of big-money pharmaceutical companies, but what can people who are suffering so much, do now? some of us have even had heart attacks and/or cancer already. is it too late for us?
It is not too late for you. There are treatments that can help you that are homeopathic (L-carintine), yoga practices and there are also clinical trials which could possibly help you. Do not give up.
The reason the don’t do anything is that they cannot, and unfortunately neither can the homoeopaths. If this could be sorted it would have been.
Some of those suffering with CFS may be helped by significantly raising their vitamin d levels. The hormone the body makes from vitamin d is a powerful modifier of the immune system and seems to be able to fully suppress viruses and reduce inflammation at the same time. This is why the people working on MS are so excited. Taking 10,000IU of d3 per day allowed me to clear Epstein Barr virus induced CFS, but that does not mean it will work for others. However, no one has ever overdosed on 10,000IU of d3 a day and it will give you good bones and less lung infections.
Guide Response: While many of us benefit from taking vitamin d or d3 supplements, it is possible to overdose on it. Please work closely with your doctor before starting high-dosage supplementation, know the side effects of too much, and get tested regularly to make sure you’re not reaching toxic levels. Here’s a place to start: Vitamin D.
To see the effect of 25(OH)D blood level vs vitamin d supplementation see the grassroots-health website. There is a graph at the top from their on going research. Note that no one on 10,000IU a day of d3 is anywhere near the blood level where the 25(OH)D starts to affect calcium levels. Also low vitamin d levels are more likely to give you kidney stones than high levels as low 25(OH)D levels in the blood tends to lead to hyper-parathyroidism.
Also note that vitamin d formed on the skin or taken as a supplement is inert. This is converted into 25(OH)D which is a storage form and is also inert. 1,25(OH) is the active form and is a powerful hormone. It is carefully controlled by the body and affect calcium levels and the immune system.
I AM SOOOO SICK OF people talking about vitamins or “natural” remedies when it comes to CFS. If it was that simple so many of us would be “cured” by now. THESE REMEDIES DO NOT WORK IF YOU TRULY HAVE CHRONIC FATIGUE SYNDROME! I’ve gotten vitamins infused through my veins!!!! I’M STILL SICK AND TIRED! I’ve exercised (yes, graded exercises), prayed, thought positve thoughts, taken antidepressants, taken stimulants, gotten injections, changed my diet (gluten-free, vegan, raw,…..), been tested for EVERYTHING, and too many other things to name. Guess what!? I’M STILL SICK AND TIRED!!! So if YOU took vitamins and you’re cured, YOU had a vitamin deficiency…NOT CFS!!!!
Alrighty then!……after reading the post on vit D…..I was thrilled! ready to get 1 of my “toolboxs” full of vits etc….and down some vit D! high quality emulsified vit D..wow!! who knew I had the answer right in my hands…..Sosha.. I have to agree…I’ve had it all too,…IV treatments, ozone…blood delivered thru UV light to kill VIRUSES,bacteria,fungus,molds…you name it!the this, the that……I’m still sick!!!…FATIGED!! I want it gone!!!!!NOW!!..I do think I’ll be uping the vitD though…
Sasha – I heartily agree with you! Been there, done that, too.
I’m very interested in Dr.Mikovitz’s comment on progesterone…medications that help level progesterone levels…because progesterone levels “up-regulates XMRV in lab tests”…………..being a hormone…would explain more women effected? also..symptoms worsening with age? hmmmm…….think there reports of onset after female surgeries??……”up-regulates” what exactly does that mean??
Guide Response: The progesterone connection certainly could contribute to the higher rates in women. I haven’t seen reports of higher incidence of ME/CFS after female surgeries, but hysterectomy and early menopause do raise the risk of fibromyalgia.
Up-regulating in this case basically means that it speeds up the way the retrovirus impacts your cells, so it would make the infection spread faster. ~Adrienne
I agree with Jan’s comment wholeheartedly! I searched the internet for progesterone leveling px and found ZERO. A lot of the articles argue the dangers of low levels of progesterone, hence the term “leveling” being used, I conclude. Does anyone have any info on this? This is a “tangible” and medically suggested therapy and I want to try it ASAP. I’m 48, female and have had CFS for over 18 years. Also, out of 8 children and 2 still living senior parents, I am the only offspring to have CFS. Any feedback will be appreciated. And thank you Jan for your comment.
I think mine was partially triggered by removal of an ovarian cyst(as big as a large cantelope) and the enveloped fallopian tube. I was also very stressed going in to surgury because my Dr couldn’t be found.I had to be at the hospital at 4a.m. I waited 5 hours for him to show up for surgery.If they hadn’t begun sedating me while I told him off, I’d have been walking out of there.
Then I had a halucinatory fever at home the day after.
I would be wary of some yoga practices as they can lead to cfs/me.
I believe my cfs/me was caused by yoga.
I have to agree with Sasha about how vitamins will cure CFS. As well I was in the Google newsgroup and I’d always see when soccer players in Europe would be diagnosed with CFS and they’d take 6 months off and be better. I’ve taken over the past decade off and I haven’t felt any better.
This loose use of diagnosing CFS could very well be the reason it’s hard for some to believe. As well those without the disease hear about these “recoverings” and think it can’t be that bad.
I believe either CFS has many degrees of the illness and some of the people that are tired all the time and found a “cure” really wasn’t diagnosed properly.
Or possibly the disease was caught in a very stage – a stage many of us probably pushed ourselves off to work. I know I probably worked for years at UPS with warning signs of the disease telling me something was amiss. It took my customers to tell me I’d better see a doctor before I finally did.
Vitamin cures? I really don’t believe that’s possible in a vast majority of properly diagnosed cases.
If FM and CFS are caused by the XMRV retrovirus, then vitamins are unlikely to make a difference. Large doses of Vit C (ascorbic acid) may help kill bacteria, yeasts, retro virus’s etc due to its strong properties as an anti-oxident. Ultimately though I doubt that there will be any real help until the scientists come up with an anti viral drug that is specific to the XMRV. I have been treating myself as though I have the flu. Rest, Vit C, Three kinds of pain killers and the usual anti depressant, exercise when able…and I seem to feel a little better. Remember…ignore doctors and pharmaceutical companies.
I don’t think anyone is suggesting that supplements are a “cure” by any means, but if they can boost your immune system and help your body fight infection, they may be able to lessen your symptoms and improve your quality of life. Until we know more about drug treatments, supplements are one of the few options available for improving immune function.
I am taking 200 mg of progesterone daily to help me with my perimenopasal symptoms and with my sleep. After hearing the seminar and how progesterone can basically feed the virus, I am terrified as I am on a very high dose of progesterone and without it. I simply cannot sleep. Will the virus replicate quicker and make me sicker by taking supplemental progesterone?
Guide Response: First, remember that this is preliminary research. While it’s promising, we still don’t know for sure that XMRV is a cause of, or even related to, chronic fatigue syndrome. Being perimenopausal, your natural progesterone level is low, so by supplementing you’re bring the level up to a normal range. So far, we have no idea whether there’s a difference between natural or supplemental progesterone and XMRV replication. I’m not a doctor and I wouldn’t presume to give you advice on this issue — this is just information that I hope will help you. Be sure to talk to your doctor about your treatments and concerns, and possibly consult with a viral specialist. ~Adrienne
Hi Jody,
I also use Progesterone for menopause, although some of the symptoms are so similar i.e. sweats memory problems etc. I use bioidentical hormone cream from Emerita, worth a try, and better than the tablet form.
Helen
Dr. Mikovitz suggests that “things that improve natural killer cell function” may help. What are these things?
Mary Ann,
Some drugs that target the immune system can improve NK cell function, but they also can have a lot of side effects. Other ways to raise the include vitamin C and other antioxidants, and also exercise (which comes with its own potential set of problems.)
~Adrienne
I just wanted to say, thank you for this article. Get to see “Chronic Fatigue Syndrome” in the title rather than ‘Chronic Fatigue”.
VITAMIN D IS A “SECOSTEROID” – Lyme Patients and others with bacterial/ pathogen loads SHOULD NOT TAKE THIS.
Anyone with an extremely low d count <14 most likely has an underlying bacteria load, immune disorder or parathyroid issue. In these conditions, the body automatically down regulates D or blocks D as a PROTECTIVE MECHANISM TO PREVENT EXTREME INFLAMATION. These people should not take vitamin d supplements. D is not a vitamin but a “seco-steroid”. Steroids will make any pathogen in the body PROLIFERATE. At first, there will usually be a positive effect (as all steroids have initially) and then symptoms will EXPLODE as the pathogen load multiplies. People with Lyme Disease in particular should not take d supplements. Steroids of any kind (seco or otherwise) are disastrous to Lyme patients. The pathogen load must be eliminated BEFORE the VITAMIN D RECEPTOR will work properly again. Bones can be strengthened with calcium. D is not absolutely necessary for bone health. Its action is corollary not causative as we are being told.
Please recognize that many people are experiencing very negative side effects from D, such as EXTREME PAIN, and heightened symptoms from their underlying disease process. Their doctors are so in love with vitamin D that they will not even consider that the supplementation could be the problem. They can only see that the patient is low in D. They tell the patient to take MORE!!!! They ignore the massively increased symptoms and pain.
Please look into this and make people aware. Vitamin D is great for some and threatening for others. We need a balanced view on this overly popular “vitamin” that is good for some and disastrous for others. Do your homework and help others. D really is a seco steroid.