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XMRV Lecture by Dr. David Bell

On Jan. 15th i attended a lecture by Dr. David Bell discussing XMRV and CFS. I thought i had read all of the latest XMRV news, but i really got alot out of the lecture.

He started out discussing the basics like the definition and criteria of chronic fatigue syndrome.

The current definition says that a person has to have 4 of the following 8 symptoms to meet the criteria for CFS. Those symptoms are:
1 – post exertional malaise
2 – cognitive disturbance
3 – non-refreshing sleep
4 – recurring sore throat
5 – lymph node pain
6 – recurring muscle pain
7 – multi-joint pain
8 – headache
& the absence of any alternative explanation.
( i personally only have 3 out of 8, i have no pain issues)

Then, he discussed the basics of what retroviruses are and how they infect cells.

XMRV stands for xenotropic murine retrovirus. It is an RNA virus that is able to “change the DNA within a cell and insert itself within the human genome. The xmrv virus then replicates as part of the host cell’s DNA. Once the virus’ genetic material is incorporated into the host cell, further generations of the cell will also contain this viral DNA.

Then he talked about the Whittermore-Peterson XMRV study.

The results of that study were:
68/101 people that fit the criteria of CFS were DNA positive for the presence of XMRV.
19 were antibody positive for XMRV
10 had protein expression (meaning that the virus was replicating)
So, in all 97 out of 101 had some type of positive result for XMRV.

Dr. Bell believed that the WPI study was a very strong paper and very good evidence in spite of the recent study out of the London Imperial college study (which failed to detect XMRV using a nested PCR technique). Also, there are around 10 more XMRV studies currently in progess.

He stated that there are currently tests for XMRV, but he believed that it wasnt really worth it to get tested now because: A) the test is very expensive B) there may be more accurate tests in the near future. He thought it might be a good idea to wait 6 mo. to a year, until the results of the replication studies are out.

He talked about some findings in CFS patients:
1) 70% of Lymphocytes activated
2) Abnormal RNAse L
3) Decreased Natural Killer Cell function and number
4) Immune Activation: Activated T-Cell, Cytokines, and Chemokines

How is XMRV Infectious?: it is unknown at this time. (he talked more about this when questions opened up and was open to the idea that it might be infectious the way mono is infectious. As he and other people noticed that couples did not tend to get sick, so he didn’t think that it was passed as an STD. He did note that it tended to run in families, but he thought that might be due to inhertited mitochondrial dysfunction.)

The WPI studies also showed that XMRV infected live cells in culture, showing that it was infecting B,T, and natural killer cells. So there proof of the infection passing from cell to cell.

The cytokine profiles of CFS patients support the theory of retroviral infection. RNase-L is very active in CFS patients and this may be seen in people that are fighting an RNA based virus (whch is what XMRV and other retroviruses are). RNAse L is an effector in the interferon induced antiviral response. This fits the RNase-L abnormalities noted in CFS patients.

In CFS patients NK cells become impaired and there is a “subtle immunodeficiency”. This may allow other viruses and infectious agents to persist. He believed that many of CFS symptoms may be caused by secondary infections and noted that some patients had improvement by treating secondary infections like: mycoplasma, HHV6, Epstein Barr, etc.

He also talked about a case a case in Belgium where 8 people contracted CFS after a blood transfusion. Fear of the contamination of the blood supply might be what creates alot of attention on CFS and XMRV. He stated that virologists seem to be very interested in XMRV.

He also thought CFS may just be the beginning of what diseases XMRV may have a hand in. He stated that fibromyalgia and multiple sclerosis might be XMRV related.

He discussed treatments for XMRV
He thought that the 25 years of HIV research would be very helpful when looking for treatments for XMRV. But that anti-retroviral drugs are very dangerous and he didnt think doctors would prescribe these drugs based on an unproven theory.

- One thing that i really found interesting was when he started about low blood volume in CFS (in response to a question from the audience). Dr. Bell was involved in studies that looked at the blood volume of CFS patients and he found that “eighty percent of [the] patients with CFS had either a low red blood cell mass, plasma volume, or both”. (This was also supported in an NIH study)

The audience member had his blood volume tested and he had 30% less blood volume than normal.

Dr. Bell’s theory for the low blood volume was that there might be systemic vasoconstriction. One idea he had that might cause this was the release of chemicals called isoprostanes that are released when the body is under oxidative stress.

He also stated that if you could normalize blood flow to the brain, then it may help resolve many symptoms. But there were no good treatments to restore blood volume at this time. He also stated that he had patients that had low blood volume and had blood transfusions. They had some symptom relief from the transfusions, but the benefits only lasted a couple of weeks.

Below are all Dr. Bell’s slides from the lecture: (click for larger image)


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19 Responses to “XMRV Lecture by Dr. David Bell”

  1. katy says:

    Many thanks for posting these notes for those of us who couldn’t attend!

  2. anonymous says:

    Thanks for posting! supposedly CFS/ME Knowledge Center will try to get the video online of Dr. Bell talking.

  3. Linda says:

    Thanks so much for thinking of thousands of us when you wrote this blog. Thanks to Dr. Bell for coming out of retirement to continue his research into finding a cure for all who suffer from CFS/ME/XMRV/XAND

  4. Katrina says:

    Thank you for putting all this information in layman’s terms!

  5. jessica l.porter says:

    thank you dr.bell

  6. This is *very* interesting, particularly the “definition” of 5 out of 8. This may help to provide even a small level of clarity on a very complex issue.

  7. Heather says:

    Thanks for putting this info out in a easy way to understand…Heather

  8. Jennifer Bennett says:

    Thank you, and Dr Bell of course, for writing so clearly about these complex (for non-virologists!) processes involving the XMRV viruses and CFS/FMS/MS patients. Here in the UK it would seem that the Blood service are still very happy to take my blood (and organs if it should come to it) in spite of all this news so I have just written to them asking for an explanation, and emailed them a report from the Netherlands…

    If this research is “proven” true it would make so much sense in my own case of Fibromyalgia.

    Thank you!!!

  9. Gayle says:

    i can’t find any name or address for author of this article. I also have 3 of the 8 symptoms, and also have no pain. I have seen a CFS/ME specialist for 3 years, in addition to over a dozen specialists and alternative practitioners for life altering fatigue. I’d like to share notes etc. with someone with the fatigue but not the pain. My CFS doc says I am unusual. Because I only have 3 symptoms, I don’t fit the official CFS diagnostic codes. Thankful for no pain, but don’t have much of a medical identity.

  10. Ed Pullen says:

    Good post. This whole drama continues. The Wall Street Journal Health Blog has been following this closely too, and I posted links to two of their relavant posts today.

  11. Sandy M says:

    I have had Chronic Fatigue Syndrome which was diagnosed by Dr. Paul Cheney. Then he seemed to disappear and I now see Dr. Charles Lapp in Charlotte, NC. I have also listen to Dr. Bell and I am more confused than ever. I know I have CFS/FM but not sure if rhey are the same illness or 2 different one. My fatigue seems to be more debilitating than the Fibromyalgia pain. In most people it apprers to be the other way aroud. I am house bound because of my fatigue. My local doctors blame it on everything from depression to agroaphia. I do not have any phobias. I am not aftaid to go out, I am just too tired and weak. But, no one seems to understand my severe fatigue. Can anyone shed some light on this problem with fatigue verses fibro pain?? I think I am still very uniformed.

  12. Bridget T says:

    I contracted chronic fatigue in 1989 when it was still considered a yuppie disease. I did not know what was wrong with me, just that other young mums seemed to cope whereas I would sit behind my bedroom door at least once a day and sob with exhaustion. Serious pain only set in 10 years after the fatigue started. The pain was so bad I thought I would end up in a wheel chair within the year so I insisted on some proper answers from my doctor. Extensive tests in Cambridge UK “diagnosed” I had chronic fatigue. Fortunately for me I was originally wrongly diagnosed with PBC and began following the high protein, low carb, no fat or additives diet that was recommended for this at the time. This diet has given me my life back albeit my recovery was slow. I am even getting the common cold again for the first time in 25 years!

  13. Jen Busch says:

    Very good post I really enjoyed it. Just a side note -Last Friday, the American Red Cross announced that it will not allow those with Chronic Fatigue Syndrome to donate blood . The reasoning was to lower the risk of tramsmitting the (XMRV) – the xenotropic murine leukemia virus. Even though studies have not clearly shown that XMRV is the cause of Chronic Fatigue, the Red Cross announced the barring of people with Chronic Fatigue Syndrome to reduce the risk of transmitting the virus that has been associated with some people with Chronic Fatigue.

  14. Lisa says:

    First I would like to say that I have just found your blog and can not get enough. Looking very forward to reading everything that you have for us on CFS/Fibroymalgia…thank you! I have had this illness for 20 years now. I have a son that is 17 also with CFS. I will also add that my husband past 10 years ago from colon cancer, he was only 37. I think xmrv will be linked to it. But for now I want to comment to Sandy about the fatigue. Noone will understand what you mean by this unless they have been in your shoes.I know if I had not felt it myself I would not understand. I would never think it is as bad as it is. Because I would not think anyone could cope. They would be at the ER, like we have all done. They would be talking about it, like we do. They would be searching for help…like we do. But noone can see that. My illness has changed on me over the years, back and fourth. Fatigue, pain, brain fog, sometimes its one or the other and sometimes its all and more. I can get so fatigued that I can not talk or move, that is when I do nothing but sleep in a “fog like state”. It almost feels like what it would be like to be close to death… out of it but able to hear a pin drop but being so far away in mind that I don’t care to respond. Maybe like a drug induced state but with out drugs. Then there are times that the pain is so bad that nothing will help. I have laid between the matress and boxspring of my bed hoping the preasure would help and sometimes it does. I have laid weights on my legs, searching for relief. Between the two I could not choose which is worse. Of course you can not and would not want to leave your house when you are feeling either one. Each one is disabling in different ways. I hope we all get some answers soon.
    God Bless.

  15. chris says:

    i got cfs after an unknown virus which i got in either the philipines or thailand. all tests done show negative so i say i have cfs. the most annoy symptom for me right now is the muscle and joint pain. for energy,memory and sleep i suggest people try acupunture and herbs. treat every symptom one at a time. the muscle pain is the one i cant seem to get rid of but hopefully time will help that

  16. Dr Jerrel Boyer says:

    This is a very good article. Certainly it suggests that a retroviral activity may account for some cases of chronic fatigue. Obviously fatigue is a many faceted problem. I have found that many cases of fatigue can be helped by dietary modification. Other causes (under treated) are subclinical hypothyroidism, persistent cortisol elevations, low testosterone and other hormone imbalances.

    Dr Jerrel Boyer
    Chief Medical Officer

  17. Hayden Rhodes says:

    It is very true that many people cannot understand just how numbing CFS can truly be, not only on a physical level but on a mental one also. I have found that no matter what when I work on improving adrenal function it helps dramatically. Running some other lab tests and not the typical blood tests also gives me a lot of information I can use to beat these conditions from the inside out.

  18. tori says:

    Dr. Boyer, I have low cortisol and that is part of CFS. It’s adrenal burnout. Maybe some have high cortisol but low cortisol is common too. We take adrenal supplements or low-dose hydrocortisone.

  19. tori says:

    Also many of us are found to have undiagnosed Lyme and coinfections. The number I commonly hear is 70%, all dx’d with cfs/fibro first. I’m one of them.

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