Some notes I took while viewing the video - I think I got most if not all of the important points
NOTES: Scientists from the WPI (Whitemore Peterson Institute), the National Cancer Institute and the Cleveland Clinic have discovered a connection between XMRV and ME/CFS.
There are only 2 other human retro viruses that are known. Human T cell leukemia virus and HIV. Both of these viruses cause cancer, neurological diseases, immune deficiencies and inflammatory disorders in man.
XMRV was originally discovered in prostate cancer tissue of men with a specific genetic defect by a Doctor Silveman (sp?) at the Cleveland Clinic. The genetic link is the hereditary prostate cancer number 1 (an anti viral enzyme) that is also a hallmark of the abnormality in ME/CFS patients. The co-founder/President of the lab has a daughter with ME/CFS and they were looking for the underlying cause. They saw this connection and decided to explore it further.
Every symptom of CFS fits perfectly with a retro virus
It's a simple retrovirus so it's on/off switch is controlled by just 3 things 1. Response to hormones hormones like androgens and progesterones activate XMRV makes sense as to why CFS is more prevalent in women
2. Inflammatory cytokines NF-Kappa B element inflammatory events as caused by other pathogens turn on the virus
3. Cortisol (the stress hormone) turns on the virus very rapidly and continues to have it expressed
They have done studies and found XMRV present in a significant number of autistic patients but it won't be the cause of all autism
Speculation as to why vaccines might lead to autism in some children. These viruses live, divide and grow in lymphocytes (the immune response cells, the B and T cells). A vaccine sends your immune system (B and T cells) into overdrive. If you are harboring one virus and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. You could have had the underlying virus and then amplified it with a vaccine and then set off the disease such that your immune system could no longer control other infections and created an immune deficiency.
Vaccination does not cause autism but rather a number of factors, genetic susceptibility to the illness, the infection itself and then on top of that you are adding something to the mix that takes the child over the top. (I assume she means vaccines take the child over the top)
XMRV could be linked to a number of neuro immune diseases
We already have FDA drugs approved that work on retro viruses so we can begin rational clinical trials where we can treat and prove causality. They are working with the NIH to get funding into this area of research as soon as possible. They expect to get a lot of help from the scientific community based on responses at presentations to NIH and other scientists.
They've already talked to a large group of scientists about a vaccine. It will be easier to find a vaccine for XMRV than for HIV because it is a simple retro virus.
We included fibromyalgia patients in this group. We tested blood samples from Fibromyalgia patients and they tested positive for XMRV as well
Transmitted through fluids and blood. Not airborne.
For more info on XMRV, go to their website. They hope to make a discussion board available on this site. http://www.wpinstitute.org/
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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TerryK
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Finding the cause and thus a treatment for an illness that affects a million people in the U.S. and an untold number all over the world and has baffled scientists for decades seems very hopeful to me.
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sutherngrl
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This is very interesting! Makes you question the lyme diagnosis!
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posted
Problem is very few are testing positive.
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sutherngrl
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Myco, do you mean very few are testing pos for XMRV or for LD?
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TerryK
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I heard from my LLMD's office that about 50% were testing positive. That is from a very small group though.
Terry
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SForsgren
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I had heard one group of 50 people in a small study done with people that had autism and Lyme complex had 49 of them test positive. Not sure though how accurate that report is.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sutherngrl
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I just wish I knew if this virus could cross react and make lyme specific bands show up. My guess is my LLMD would say no to that.
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posted
Very few Lyme Disease patients are testing positive and they are having lots of problems with the tests. I would wait. There is no treatment for this kind of retrovirus anyway.
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TerryK
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Myco - where are you getting your info about lyme patients and XMRV testing please? How many have been tested and what percentage tested negative?
Thx, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Myco, the problem with the tests is mainly with the Cooperative Diagnostics test (in which ALL patients, Lyme and ME/CFS, are testing negative). The VIP lab test seems better for ME/CFS, more consistent with the results of the original study by the Whittemore Peterson Institute (the originally study that found about 2/3 positive, not the later study that found 95 percent of ME/CFS patients had antibodies to XMRV).
I personally don't believe a lot of Lyme patients will have XMRV, as I believe ME/CFS and Lyme are different illnesses, though there is overlap. If Lyme patients don't have severe exercise intolerance ("push-crash") caused by mitochondrial dysfunction they most likely don't have ME/CFS and subsequently XMRV.
What this means is that patients will take at least 24-48 hours or more to recover from activity (including seemingly minor activity), and this can be expanded to weeks, months, or years of recovery from activity.
There are other hallmark symptoms of ME/CFS, but I think most ME/CFS docs who treat a lot of patients believe that without this symptom, it's unlikely that one has ME/CFS.
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TerryK
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^ for question to myco.
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I'm on the waiting list to be tested. I hope if they are having problems with it that they get it fixed before I spend the money to get tested.
I do have severe exercise intolerance. I also have a positive Lyme test. My doctor thinks I have both XMRV and Lyme. I have very low natural killer cells too.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I got my information from my LLMD and also have been following the CFS boards closely and results for VIP lab. Lots of problems right now with testing.
LymeCFIDSMCS - I had severe exercise intolerance (could barely walk a few feet after exercising, had to lie down) but that resolved with antibiotic treatment. I also know many, if not most Lyme patients who have post exertional fatigue. Especially those with Mycoplasma and Babesia,
Be well.
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I have been on atibiotics for almost five years with little improvements. I think I have Lyme, but I think I have something else too. If not XMRV then something else.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Oh, and I can't exercise at all. I'm in a wheelchair, and any kind of exercise sets me back for weeks. That and exposure to viruses will set me back for weeks. I catch everything and it takes me for ever to recover.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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TerryK
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Thanks myco. I guess we have mixed results then.
I agree with you on babesia and exercise intolerance. Mine has improved since I've been in treatment for babs. Still not very good but I can see improvement.
Ticks also carry viruses. I wonder how many if any carry XMRV.
Terry
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quote:Originally posted by TerryK: We included fibromyalgia patients in this group. We tested blood samples from Fibromyalgia patients and they tested positive for XMRV as well
I am rather surprised by this statement. I think fibro and CFDs folks present very differently.
I lived with someone with CFDs. I could go out all day long and do stuff, albeit with a reduced energy level.
My housemate would go out once and that was it for the day - total exhaustion from one outing.
I was under the impression that people with fibro would not have this retrovirus.
Terry, regarding your question just above here about ticks with the XMRV virus, I think what people are thinking so far is that maybe people who have the XMRV got bit by a tick that initially bit a mouse and that's how the tick picked up the virus.
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TerryK
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Thanks Robin, I hadn't heard that ticks pick up XMRV from mice. I didn't know mice were a proven vector.
There is such a huge overlap with fibromyalgia and Chronic Fatigue Syndrome. Many of us seem to have both or at least symptoms of both. I was diagnosed with both. From my experience, Fibromyalgia seems to be a catch all for unexplained pain which in my view can often be explained by infection.
Terry I'm not a doctor
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Myco, I'm not saying Lyme patients don't often have exertional exacerbations, but rather the opposite: I'm saying if they DON'T have those, they definitely don't have ME/CFS in addition to Lyme. I simply don't agree with the ME/CFS=Lyme people.
I have had a lot of symptoms clear up with antibiotics, but not my underlying CFIDS. And I've had different types of fatigue and cognitive problems and other symptoms with both CFIDS and Lyme (in other words, my Lyme cognitive problems are different from my CFIDS ones, etc. -- all horrible but different) -- so I personally, based on my experience and that of friends, do not believe these are the same illness at all.
I do think many people are misdiagnosed with one or the other as I think there is a lot of overlap of symptoms which is why misdiagnosis occurs. In that sense, XMRV could also be looked at as a coinfection that some have and some don't, or Lyme could be looked at as a coinfection of XMRV, but I think it will prove true that people without XMRV don't have ME/CFS, but rather Lyme that has symptom overlap with ME/CFS.
I think it's just important to distinguish because a lot of Lyme patients treat ME/CFS as nonspecific or the same as Lyme and I don't think that's at all accurate. I do think a lot of ME/CFS patients HAVE Lyme and vise-versa, but this is like saying a lot of Lyme patients have bartonella, not that Lyme IS bartonella.
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