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Lessons from ME/CFS: Finding Meaning in the Suffering
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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Kati

    Kati Patient in training

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    Wouldn't that be great to vote for Dr DeFrietas to replace Reeves at the CDC'???
  2. Summer

    Summer Senior Member

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    Oh, I love that idea! :D
  3. Jessrose21

    Jessrose21

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    Thank you for your permission to copy your ideas! It's so helpful to me. I came up with point #5, lifted from Dr. David Bell's Lyndonville Newsletter that came out today. Somehow, I don't think he'll mind!

    5) Federal approval of diagnostic testing for XMRV needs to be put on a fast track. Now.
  4. Jessrose21

    Jessrose21

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    Ahhhhh...poetic justice! :D
  5. oerganix

    oerganix Senior Member

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    jenbooks said: "I'm not a conspiracy theorist but it takes me just a few tiny baby steps to say that the military-industrial complex was working on this stuff and it was either tested or escaped."

    I, too, have wondered about this. When I first got this it was the SUMMER of 1982 and there was this massive "outbreak" of "flu" in San Jose CA. After two days of vomiting so hard I finally had nothing but small streams of blood coming up, and feeling like I was dying - indescribably worse than any "flu" I'd ever had, I went to the emergency room of Kaiser. It was full of people in the same condition, people groaning on the floor, as there were no more empty chairs. They told us it was "going around", go home and drink fluids, the usual BS from Kaiser. Then the doc told me something strange: "We could help you with those spots on your face." I didn't now what he was talking about and was practically delirious, so when I said "What spots?" he replied, "Well, if it doesn't bother you, then we don't need to do anything about them." I went home and looked in the mirror to see these "spots". I was so white, so colorless, that there were splotches of what looked like tanned skin all over my face and neck. Later, when I regained my normal color, they were not visable. Perhaps this was due to the low blood pressure that was making me feel so dizzy?

    Anyway, it has always mystified me as to why there would be a massive outbreak of "flu" in the summer, in a warm climate like San Jose CA. Nobody in my office had this before I got it and nobody got it from me. And I do recall that decades earlier, Army bioweapons researchers were found, through the Freedom of Information Act, to have released LSD in the air somewhere around the Bay Area, and then monitored local hospitals to see if they had an increase in emergencies that could possibly associated with LSD. Apparently they were researching diseases/conditions that could sicken/immobilize the enemy without killing him, so that a lot of resources would be used in taking care of the ill and disabled.

    Regarding William Reeves, wasn't he the guy who got slapped on the wrist for diverting NIH funds earmarked for CFS research to polio and chicken pox research instead? He, or whoever it was, should have lost the job and gone to jail, but his "punishment" was to conduct "seminars" on the proper use of earmarked research funds. Someone had to have run interference for him on this.
  6. jenbooks

    jenbooks Guest

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    Thanks for your story oerganix. What a story, too!

    I imagine Reeves is just carrying out orders.
  7. Martlet

    Martlet Senior Member

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    I am impressed! I never met anyone who could stand it for long ... or who could stand up afterwards. :) As you say, it doesn't give the whole picture but it gives them some idea of the level of muscle fatigue.

    :) I am still impressed!!!
  8. Finch

    Finch Down With the Sickness

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    Martlet, don't be too impressed. It wasn't THAT long. I really can't stand up for very long now most of the time. Five minutes can do me in some days.
  9. Martlet

    Martlet Senior Member

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    Finch, I am very sorry to hear that.
  10. Rrrr

    Rrrr Senior Member

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    has everyone seen these videos? they are great

    Interviews with Whittemore Peterson Institute on YouTube
    here are some *great* YouTube videos of interviews with the major players at WPI: Judy Mikovits, Annette Whittemore (the mom of a PWC) who founded the Whittemore Peterson Institute, WPI Vice President Mike Hillerby, and Dr. Peterson. i'll list the interviews chronologically.

    THIS IS THE NEWEST VIDEO FROM THIS WEEK:
    WPI interview from Oct 8, 2009
    http://nevadanewsmakers.com/video/de...asp?showID=938

    WPI interview from 2007 (video in part 1 and 2)
    http://www.youtube.com/watch?v=azqNRDDRwFY
    http://www.youtube.com/watch?v=C12ELWgCzGA&NR=1

    WPI interview from Sept 8, 2008
    http://www.youtube.com/watch?v=EbLjy...242&feature=iv
    http://www.youtube.com/watch?v=_wR03...246&feature=iv

    WPI interview from March 2009, i think (part 1 and 2)
    http://www.youtube.com/watch?v=TRtxMYI-zKg
    http://www.youtube.com/watch?v=gYUE7...eature=related

    this one is also great, also from March 2009, i think
    http://www.youtube.com/watch?v=nfLoi...eature=related

    if these clip links don't work, just go to YouTube and search for Whittemore Peterson Institute
  11. The Phantom

    The Phantom Member

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    Your point #5 is very important. I wish I'd seen it before I sent in my testimony. Unfortunately, after I posted the 4th point I sent in my testimony and then went back to bed. Oh well. Hopefully, many other people mentioned it. It looks like Whittemore-Peterson is moving as quickly as they can on a commercially-available test, but it's also possible CDC will try to derail this effort.

    I love the idea of DeFreitas replacing Reeves. Love it, love it, love it.
  12. Cloud

    Cloud Guest

    I don't believe for a second that Reeves is going to do anything other than attempt to discredit the WPI discovery. He is a heartless man with a political agenda. The CDC has vested interest in maintaining the lie they have perpetrated for 25 years now. I expect them to show up at the conference in DC in a few weeks with the same agenda of pushing their 5 year plan and, God forbid....they may pull it off. But, I think this will matter little to the WPI because they are moving forward with or without the CDC. And I feel that is exactly what all of us, our researchers, and our advocacy agencies should do. Very soon, we will not need the CDC or their money....Fewer and fewer physicians will look to them as the authority on this disease. Imagine moving forward without them and leaving them to sulk over their new debunked status. No more talk about what the CDC does or does not do until we return with a lawsuit after having more revealed about their crimes. Their job is to protect us from infectious disease....I would say they have not only failed miserably, but they have caused massive public harm....They have blood on their hands!

    Yes....Dr DeFrietus for head of ME/CFS research at the CDC!! We Love you Elaine! Thank you WPI for standing for us regardless of much opposition. Thank you for changing our lives for the better!




    QUOTE=The Phantom;7337]Since this group seems to be on the topic of advocacy, there is less than 24 hours to send in written testimony to the CFSAC.

    I think we've all been busy digesting the XMRV news, which is great but also leaves us with a lot of questions about how to integrate this new info into our lives. I believe that we are about to see one heck of a fight: scientists like Reeves don't like having their pet theories debunked, and he's going to do his best to defend it. I don't think that the empirical definition is dead yet. I think Reeves is going to attempt to debunk Mikovits' findings by testing the Georgia cohort (most of whom don't have ME/CFS), and he will, of course, find a much lower incidence of XMRV in that population. He will then claim to the press that the Whittemore-Peterson data is wrong. The press won't know that he has used a different definition. Most scientists and doctors won't know that he has used a different definition. A negative study (a study that shows that a theory is wrong, or that fails to reproduce a researcher's positive findings) is extremely powerful in the scientific community. Most researchers don't want to continue along a certain line of inquiry once a negative study has been published. That's what happened to Elaine DeFreitas' work on retroviruses 15 or so years ago. I think Judy Mikovits is strong enough to take Reeves on, but it would be a better use of her time if she didn't have to. Also on the positive side, there are NIH and Cleveland Clinic researchers already involved, and that makes it harder to debunk the findings. In addition, the autism community, which has a lot of political clout, has a stake in the fight. And the XMRV story is very scientifically intriguing, so in the long run I think there will be a lot of interest in the virus. So I think we will win, ultimately. That said, I think it's actually even more important now for the CFSAC to make a strong statement condemning the Reeves empiric definition. That will help to undercut any negative research Reeves attempts to publish.

    Hopefully, in six months or a year we will have a new name, XAND or something else, a new definition and some progress toward a cure. But, just to help prevent Bill Reeves and Peter White from delaying progress, I hope that anyone who hasn't already sent in written testimony will copy & paste the statement below (or make their own statement) and send it to:

    CFSAC@hhs.gov

    before 5 pm tomorrow. (They originally said October 15, but they have changed it to October 14.) CFSAC isn't making it obvious how to submit written testimony on their website, but it looks like this is where to send it. Probably it would be best to put "Written Testimony CFSAC meeting October 29-30" in the subject line. Please alter the statement below in any way you want, add anything to it that you want, or rewrite it completely & post it if you have a better idea or a better wording. If you hate the name ME/CFS, put in the name you like. Testimony doesn't have to be 5 pages and it doesn't have to be polished. I've only written down these 3 statements because they're what seems to be most important to the people who have given an opinion on the M.A.D. forum, and, hopefully, it will make it easy for people who don't feel well enough to compose something themselves. If you're interested in more discussion of plans for the CFSAC meeting check out the M.A.D. forum. We all know the CFSAC is fairly toothless, but they're all we've got (so far). The one tooth they have is they can make recommendations to the Secretary of HHS. Please send something!

    To the CFSAC:

    Thank you for your service to the ME/CFS community.

    I urge you to make these 3 recommendations to Secretary Sebelius:

    1) No government funding should be made available for research using the Reeves (2005) empirical definition of Chronic Fatigue Syndrome. This definition has been shown to include many people who do not have the illness that has traditionally been called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. Any research done on the larger group defined by the Reeves definition will merely be confusing and will be a waste of taxpayer money.

    2) The current leadership at the Centers for Disease Control that is responsible for research into the causes and potential therapies for Chronic Fatigue Syndrome has wasted the limited funds available for CFS in a misguided attempt to redefine it. Meanwhile, there have been no advances made by the CDC in our understanding of the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The leadership should be replaced.

    3) If there is going to be any progress toward a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome more funding is needed. Given the new information about XMRV as a possible causative agent, it is urgent that adequate funds be allocated.


    Again, send to: CFSAC@hhs.gov

    Subject line: Written Testimony CFSAC meeting October 29-30[/QUOTE]
  13. rebecca1995

    rebecca1995 Apple, anyone?

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    Klimas

    http://consults.blogs.nytimes.com/2...onic-fatigue-syndrome/?scp=1&sq=Klimas&st=cse

    I love how Dr. Klimas tells it like it is. CFS is worse than AIDS:

    No matter what ends up happening with this research, it's fantastic to get quotes like these out in the mainstream media.

    Also, an earlier questioner brought up how the CDC tried to suppress DeFreitas' retrovirus findings. So now that's in the public record, and if the CDC once again can't replicate a scientist's findings, there'll be a bigger outcry.
  14. dannybex

    dannybex Senior Member

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    Billy Reeves...

    He's already basically admitted that he intends to discredit the findings:

    If I dont know the nature of the cases and controls, I cant interpret the findings, Dr. Reeves said.

    We and others are looking at our own specimens and trying to confirm it, he said, adding, If we validate it, great. My expectation is that we will not.

    I give him 2 cents for his first statement, as we don't know the nature of the cases and controls, but that's about it.

    No one should ever expect him to EVER change his mind or admit he was or is wrong. While I know what you're saying Ross, it's not exactly a political agenda -- it's his job.

    And yes, he should be fired, but I'm not holding my breath.
  15. Advocate

    Advocate Senior Member

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    Here are my notes from the NPR, Science Friday, that just ended. They are very rough! I assume we can get a transcript soon, but I don't know how. I also didn't know where to put this on the website, so am sticking it here.
    ====================
    My Notes, NPR, Science Friday, 2:40 p.m.

    October 16, 2009

    Ira Plato. The latest on a mysterious illnesswhat might be causing their symptoms A team of researchers report that they hit on something. 67% had a specific virus in their blood. Scientists have knownWe will have John Coffin, professor at Tufts

    Ira? Coffin? For a first report, its very good. Theres still a lot of work to establish a causal relationship

    Ira. This will vindicate. Your motivation in doing this study?

    Coffin. I didnt work on this. Worked on a mouse virus many years ago. RNase L correlation in prostate cancer.

    Ira. Larger study?

    Coffin. Larger study needed We dont know much about the association. I understand theres more than a million people in U.S. alone. Maybe multiple diseases connected to his virus.

    Ira. Could this virus be a red herring?

    Coffin. Entirely possible. Needs to be sorted out.

    Ira. Where in body is it found?

    Coffin. So far in white blood cells. Those are the easiest cells to look at. We dont know where in other cells in infected individuals.

    Ira. Other diseases?

    Coffin. About 25% in prostate cancer. It almost has to come from mice. Its similar to an endogenous virus in mice. The virus weve been studying over 25 years in mice.

    Ira. Age connection?

    Coffin I dont believe it wasnt my study. My understanding, there wasnt any obvious age. Probably no way to get rid of it. With HIV, weve tried hard to do so. Nobody has been proven to be cured of HIV infection. I suspect same thing with this virus.

    Ira. Another notable feature of XMRV is high number infected, about 4% in healthy controls. Perhaps 10 million in U.S. infected.

    Coffin. Thats the implication. Need real demographics. That would be about 10 times the number infected with HIV. There are no clinically improved diagnostic tests. Will be some time. Any tests done now are research tool. Most were developed to study the mouse virus. It is in mice. All mice carry some virus like it in their DNA. Some express an infectious virus in laboratory.

    Ira. [Phone] Hi Bobby.

    Bobby. Im 72. I wonder if Coffin has heard of the work of Dr Nancy Klimas, or the recent studies that showed over expression in

    Coffin. I havent heard of that work specificially.

    Ira. Retrovirus. How does it replicate?

    Coffin. It replicates in a specific way. Becomes part of your gene. Produces more virus. The leukemia virus is responsible for some cases of leukemia.
    X comes from xenotropic. Means that the virus is found as an endogenous virus in mice, but if you take the DNA (?) out, that virus will not infect mice. It will infect humans. But it got into the germ line of mice about a millin years ago and mice became resistant to it. Somehow it worked its way into the human population. The estimated prevalence right now is 4%. How real that number is, we have to find out.

    Ira. Thank you Dr. Coffin. Prof. of biology and microbiology at Tufts.
  16. Tony

    Tony Still working on it all..

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    Age and sex matched controls and more

    I got alerted to this posted on the WPI facebook page:
    http://www.facebook.com/note.php?note_id=155392758025

    "XMRV is strongly linked to patients with ME/CFS. This initial finding was confirmed in three different laboratories, the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute.
    Patient samples were donated from different locations around the US. This was not one cohort. All patients met the Fakuda and Canadian definitions for CFS and the study included age and sex matched controls with zip codes but Science did not feel that information was important to this publication. Not all patient samples that were positive had the biological markers of low NK cell function and RNase L defect.

    The importance of this finding is two fold. One that XMRV is an infectious retrovirus found in significant numbers in the blood of people who are ill with CFS and only in a very few without symptoms of ME/CFS. Number two is that it was found in 4% of healthy controls which means that 10 million Americans may be infected with this retrovirus.

    What you ultimately call this disease is not important. We must now try to understand how this virus is acquired and how that relates to disease and immune deficiencies. Human infectious retroviruses are not ubiquitous or benign. This virus should not be confused with benign endogenous retroviral particles that we all have in our genome. This is only the third human infectious retrovirus found to be replicating in the blood of humans to date, the other two are HIV and HTLV-1 & 2. It is a gamma retrovirus not a lenti retrovirus which means it is a simple vs. a complex retrovirus."
  17. Cloud

    Cloud Guest

    lol, almost seems planned to have held back this info until after Reeves hung himself downplaying the xmrv findings by publicly stating "this virus "IS ubiquitous", and is yet to be confirmed and replicated using independent scientific studies.
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    Well, you said the results in our immune system are similar to AIDS. Researchers are saying this virus is similar to HIV.

    Could it be this virus causes the immune system problem instead of growing as a result of our immune system problem.

    Of course, studies will show this.

    Or maybe they work in concert. You have to have a pre-existing immune system problem, then XMRV takes advantage of it, then other latent viruses grow.

    Remember, some retroviruses start attacking immediately and will ultimately cause illness and death (HIV). Some retroviruses come in and don't do much in most people, most people never get sick, but a few do and they die (the human leukemia virus). Then some retroviruses have been with us for generations and never make any of us sick.

    Now, XMRV, though, is known to attack the T Cells and NK Cells. And, it was actively replicating in 67% of the cohort.

    Here is a thought, might the other 33% have been exposed but the virus is no longer replicating because it has done all the damage it can do, and the person is sick because of all the other latent viruses. In that case, the person might show antibodies, but no virus in the blood.

    Tina
  19. cfs since 1998

    cfs since 1998 *****

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    Many parallels between CFS and AIDS (Acquired Immunodeficiency Syndrome) have been drawn. For example, from Hillary Johnson's blog:
  20. starryeyes

    starryeyes Senior Member

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    Tina-- are you mixing up viruses and retroviruses?

    There are only 3 retroviruses that affect humans: HIV, HTLV I & II (which causes Leukemia) and now XMRV.

    From the WPI:
    "Currently there are only three known infectious human retroviruses; HIV, HTLV-1 and 2 and now XMRV. HIV causes AIDS and HTLV-1 and 2 causes T-cell leukemia and T-cell lymphoma. XMRV is the most recent retrovirus discovered to infect humans and has been linked to neurological disease and prostate cancer."

    http://www.wpinstitute.org/xmrv/xmrv_qa.html

    tee

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