Summary of CFSAC

Discussion in 'Fibromyalgia Main Forum' started by UsedtobePerkyTina, Oct 31, 2009.

  1. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I thought I would put out a few highlights of the CFSAC meeting. I wasn't there. I have seen much of it on YouTube. These are things that are different from what I had known before the test.

    1) XMRV poses a threat to the blood supply.
    2) In 20 people, 12 showed signs of XMRV.
    3) The WPI test was not the same on all of the subjects. They tested about 1/3 looking for signs of the virus in one way, 1/3 they did a different test that looks for signs of the virus another way, and another 1/3 of samples were tested for the virus another way.
    4) The XMRV is very similar between the prostate cancer patients and the CFS patients. This is highly unusual. In HIV, a week after the person acquires the virus, it has mutated within their body more than the difference they see between the prostate form of XMRV and the CFS form of XMRV.
    5) A follow up to the initial study has already been done at NCI to verify the findings at WPI.
    6) All think the illness is more than just the virus. XMRV alone does not make a person sick.
    7) Despite the announcement from a lab in the Carolinas, no test is available to the public that these scientists would consider approved and reliable.

    Well, that is what I can think of off the top of my head.

    Anyone else notice something new coming out at the meeting?

  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Sorry, but I need to add one more thing. And to me, this is the most exciting part.

    Attorneys, researchers, doctors and many others from many different specialties are calling the WPI.

    This is of great interest to more than just the CFS docs and patients. Peterson said he got a phone call from a doctor asking him to look at lupus patients, also RA patients' blood.

    People who study retroviruses in general (even in animals) have great interest in it.

    Also, the WPI is focused on cooperating with any and all other researchers who want to do their own research on this. They are not shutting others out so they will have the corner of the market.

    Also, Peterson alluded to the government not looking into Ampligen seriously enough.

  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    OH, (forgive my cognitive problems) I remember something else.

    The samples were taken from many patients from all over the country. Not two or three locations, but in multiple locations on both ends of the country in many different cities.

    When asked if there is another explanation for the XMRV showing in CFS patients compared to the healthy controls besides a causal relationship, the retrovirus expert said the other explanations seem very unlikely.

  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Also, retroviruses are known for causing cancers in mice.

    There was something about the original mouse virus showing up when they interbreed. I didn't quite get that.

    Oh, and moose have nothing to do with this. (You would have to see the videos to know what I am referring to. It is a joke.)

  5. marley69

    marley69 New Member

    So that means they believe almost for sure that its not a coincidence that xmrv is showing up in cfs patients?.....thats great news I am very excited for this research nice to see some interest showed....thanks for the updates too!
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    The retrovirus expert was asked what other possibilities could explain the high showing in CFS, compared to low showing in healthy controls.

    Before each of the other possibilities, he said it is unlikely.

    One such possibility is that those geographic areas just so happen to have a high number of all people with that virus, and other geographic areas don't. That seems unlikely given the multiple number of areas the CFS samples were drawn from.

    I can't recall the other possibilities and I looked and can't find that video on youtube. Help please someone if they can find it or remember it. It was John Coffin answering questions. This particularly question came from a man with a bow tie, I think his name was Arthur, in a light camel sport jacket.

    Also, since some cancers are associated with retroviruses in other animals, they are thinking this should be studied in relation to XMRV.

  7. denis321

    denis321 New Member

    I tried to take notes during the videocast.

    #2 refers to FMS-only subjects


    In regards to point #3, what Peterson was talking about were the different tests they used on people who did NOT have PCR/DNR results showing XMRV.

    In particular, they started out with

    1. 101 total CFS subjects in the Science article

    2. 68/101 had PCR/DNA test that showed XMRV (this is the 67% figure that was reported all over the press; ALL 101 had this test)

    3. That means 33/101 did NOT have a PCR/DNA test showing XMRV

    4. In order to answer questions about these 33 subjects, the researchers perfomed three other tests
    a. 19/33 had XMRV antibodies
    b. 30/33 could transmit XMRV through their blood to uninfected cells in test tubes (?co-culture)
    c. 10/33 had protein expression of XMRV

    5. In the end, taking into account point #4 above, 99/101 subjects had AT LEAST ONE type of test positive for XMRV

    Very interesting.
    (The 95% antibody positive figure I think refers to yet another group/ study not published yet. Hard to keep the results straight.)

    Point #5

    NCI did tests on a separate group of 15 people.

    a. 9/15 had PCR/DNA tests indicative of XMRV
    b. 13/15 (87%) were positive on a co-culture test
    c. 8/15 (53%) were antibody positive

    So while the NCI tests were lower, it would be interesting to see who this group of subjects were exactly.

    The co-culture test seems like the best one so far but might be too slow and cumbersome to be performed regularly in a commercial lab.
  8. spbm

    spbm New Member

    Thanks to all of you for this information!

    Does anyone know whether the subsequent tests (i.e., the ones mentioned in #4a,b&c of Denis321's post) were done on any healthy controls? That is, if they looked again at the blood of the healthy controls to see if those people had XMRV under these other tests.

    Also, the NCI tests were on CFS patients or some other group? or we don't know?
  9. denis321

    denis321 New Member

    They didn't talk about healthy controls much during the talk per my notes but I will have to review the videos again.
    Also, it sounded like NCI did the tests on another group of CFS patients apart from that at the WPI but again, not a lot of details.

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