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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. Marylib

    Marylib Senior Member

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    XMRV activism

    Hi Koan,

    Hmmmm, I could kind of sense that you were an activist type like me. Right on sistuh! Yes I am liking this demonstration idea more and more. Would have to line up good support, as you say, since so many of us would be too ill to get around.

    I would do it too. Am an American transplanted in NZ now, but maybe we will need to do it here too if the Ministry of Health drags its feet.

    I am just now letting myself get excited about all this, cuz this news came at the same time that we learned of my father-in-laws sudden cancer diagnosis. Seems his case is advanced and untreatable, so we are looking at not much more time with this dear dear man.

    Through the pain, I cling to the good news of XMRV as being potentially good news for many kinds of cancer as well as XAND.

    Shalom,
    Marylib
     
  2. This is a great idea, I'd volunteer.

    Get Bill Reeves and Simon Wessely on that bus, ohh and a large strap!
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Okay all you activists.

    Here's something that's very easy to do from the comfort of your own couch or bed, :cool: and would make the CFS issue MUCH more public than a protest.

    Send an email to Dr Oz and ask him to do a story about CFS. Here's the link.
    http://www.doctoroz.com/plugger?tid=21

    I've gotten 15 people from this forum to do so, as well as 7 others that I know personally. There is POWER in NUMBERS.
     
  4. anne

    anne Guest

    These ideas are right on. What we need are calm, well-written and reasoned letters to the editor and even editorials in our papers. Send in letters to anyone who ran a story on this praising the work of the WPI. Visibility is good, especially well-reasoned visibility.

    And HVS is right. Reeves is mouthing off about sexual abuse and the like. He's doing everything he can to discredit this. In the end, I don't think it will matter.
     
  5. Martlet

    Martlet Senior Member

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    I would be first in line to donate them MY blood, if ever they needed it! Wonder how eager they would be to receive it?
     
  6. Martlet

    Martlet Senior Member

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    I should imagine that if you did in depth interviews with people with backache, you'd find a fair smattering of those who were abused as children. Imagine any doctor extrapolating from this that backache is caused by childhood abuse! Or getting away with it. Wessley has angered me since he first opened his mouth on this subject, but of course he is now fighting for his credibility. He will be finished, when a physical cause is proven.
     
  7. Marylib

    Marylib Senior Member

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    Hmmm, seems some are unsettled by the idea of participating in a good old fashioned demonstration. I can understand that.

    Probably no need to worry, though -- cuz few of us have the energy!

    I think well reasoned letters and editorials are great, but I also believe in creative, legal, well-thought-out demonstrations. Probably because I lived through the civil rights movement in the sixties. Don't think we would have gotten very far without Martin Luther King, Jr. and his calls to march...Well, that is not the point.

    I do have a reservation about Dr. Oz, however. While I have loved many of his presentations and applaud him, I have winced at his previous remarks about CFS ("treatable with supplements"), and his tacit declaration that Dr. Teitelbaum is a reigning authority. I have no ill will toward Dr. T, by the way, but he ain't the be all and end all in ME/CFS treatment.

    I guess I am afraid someone like Dr. Oz might be influenced by the CDC and get taken in by Bill Reeves.

    With any luck, media people like Oprah will invite someone directly from the WPI rather than going through Dr. O.

    Okay I will stop now! You won't find me chirping in here too often; can't often manage it. So you needn't worry about my being a rabble rouser.

    However, over on the advocacy link , I believe in relation to Bill Reeves and the CDC, Cort has written a mini-article calling for some kind of demonstration at the meeting on October 29. Sorry I cannot remember the details, but it is there somewhere! If people want to have their say, and if the media want to report on it, why not?

    Best wishes to one and all.
    Marylib



    I
     
  8. Marylib

    Marylib Senior Member

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    I guess we need to approach matters from as many fronts as we can manage.
    And I guess I am just horrified by the continuing abuse from Bill Reeves.

    Suppose I shouldn't be too surprised. It is just business as usual. And business interests dominate our world at this point in time.

    Ok, I will really shut up now!

    Marylib
     
  9. Koan

    Koan Be the change.

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    I think we need to do the things we are good at doing.

    Some people would not be comfortable showing up peacefully and quietly but en masse, after notifying media, at blood donor clinics in matching XMRV tshirts. Maybe on ME day next year -- when is that, anyway? (Duh!) May not be necessary, may be.

    Others can no longer write effective letters to the editor because of cognitive problems but they can read them and maybe even leave a brief comment.

    Others are most comfortable and able to sign petitions which is a huge contribution.

    Some can actually start petitions!

    Some start fund raising efforts!!!

    Some can give testimony.

    Some can give written or phone testimony.

    We will not all be able or willing to take the same kinds of action.

    And, if all the planets align, maybe we won't have to do too much.

    Maybe WPI is, very sensibly, anticipating Reeves moves - how could they not.

    They may just be as smart and prescient as we are ;)

    :D
     
  10. kurt

    kurt Senior Member

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    Dose of Reality

    OK, I have some of the same feelings being expressed in the last few quotes, but having worked with Government in the past I know that things are not as they appear to outsiders.

    A dose of reality. First, this is a bombshell, but it is just one study. Before people go off starting movements, they need to be fairly bullet-proof, and one study is just too easy for the powers-that-be to dismiss. Many studies will need to confirm the WPI results before people like us will have outside credibility for mounting protests at mistreatment.

    Rather than become a thorn in the side of the CDC at the present, I think it is more productive to encourage them to replicate the study as fast as they can, and to do a competent job. The truth is the truth and facts will have their day. If the correlation is solid, even the CDC MUST demonstrate that in their studies. If the CDC studies are flawed but many other researchers CAN replicate the WPI study, the CDC will look pretty incompetent. The CDC must stay within a certain political framework and they need to do a good job right now. So let them do that.

    As for Bill Reeves, I don't know much about the man other than what he has said, which is always skeptical. Many of us who are critical of him are making a common error I think. In this type of government work it is the position that counts more than the person in that position. Reeves has survived so long as a nay-sayer because that is clearly what he is expected to do. Our problem with the CDC ignoring us MUST go much higher than Reeves. That is how government works. Reeves will change his tune, or step down, when he is told to. We need to go over Reeves' head, way over it, to have much of a positive influence on things with the CDC. If Reeves' bosses say, 'well he has the latitude to run his projects as he sees fit,' don't believe a word of it. US Govt. Bureaucrats are all puppets and puppet-masters. Someone or some group high in the CDC, or even above the CDC, wants to ignore us, and they will find ways to continue that until they are forced to change or leave. Also, where is the NIH in all of this? They should put tens of millions of $ on XMRV very quickly, or they also are incompetent.

    My mantra is that we need to group think about big dollars for CFS, at least ONE BILLION in research and treatment funding for CFS. That is what is needed to crack a tough disease and find/fund effective therapies. That target is too high for people like Reeves to even grasp at. This is a political issue, a political battle must be fought. Forget the CDC, we need representation in Congress. Period. Nothing else will produce a billion $ and only a billion will really solve CFS, maybe more.

    My rant of the day.
     
  11. Roy S

    Roy S former DC ME/CFS lobbyist

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  12. kurt

    kurt Senior Member

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    Roy, Actually I think your post may have been very good timing, even prescient. WPI has handed us a hot new angle to CFS that really does warrant a Congressional hearing, if someone can make the right case. The issue is not just about CFS anymore, XMRV reveals more than something about CFS. If I understand the science properly, XMRV could probably have been discovered more than a decade ago, with then-current technology. But nobody was looking, or funded to look. Our health officials were playing a dangerous game of pretending that a million sick people were expendable. Now we will soon learn for certain that a retrovirus has been expanding in our population during those intervening years.

    So this is now about the need to change national health policies. The national security risk of allowing the CDC and NIH governance to continue business as usual, ignoring potentially serious new health problems for political reasons, puts us all in jeopardy.

    I read through your earlier post, that is good that Sen. Reid advocates for CFS. I can't help but think that a carefully designed argument could use XMRV and CFS to illustrate the need for re-vamping health policy. In other words, maybe there is a way to use CFS as a type of case study in the current debate over universal healthcare coverage, work into a Congressional hearing 'sideways' so to speak.

    sorry if this is off-topic, probably we need an XMRV Advocacy thread...
     
  13. dannybex

    dannybex Senior Member

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    XAND...the name...

    While it's definitely an improvement over CFS, CFIDS, CIDS, or as people repeat it back to you (oh, "chronic fatigue", i.e, you're just tired), something about this new name kind of bugs me too.

    And I don't know what it is...it sounds like a trendy perfume, or a video game...but more importantly another name that needs explanation.

    "So what's wrong with you?"

    "I've got XAND."

    "What?"

    "XAND."

    And the replies come flooding in...

    "Sand? Well, stay away from the beach."

    "Try washing your socks more than once a month."

    "So regular dirt isn't good enough?"

    Seriously, how would you reply to questions regarding this new name?
     
  14. Marylib

    Marylib Senior Member

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    Kurt's rant

    Loved your rant Kurt! I have to lie down just thinking about how the government works! (or doesn't work)

    By the way, I think there is an advocacy section on the forum. Maybe some of these posts can be moved?

    Marylib
     
  15. The Phantom

    The Phantom Member

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    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
     
  16. Dainty

    Dainty Senior Member

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    Lol, Danny, thanks for the laugh. :)

    In all serious, eventually I think I'll go with memorizing the whole long name, and then make good use of it until the person I'm talking with "gets it". Then they'll be happy to abbreviate it to something they can easily remember/pronounce. :D

    Either that or I might go with "XMRV positive" which seems to sound a little more official and can't be mistaken for anything else, like sand. :rolleyes:
     
  17. Martlet

    Martlet Senior Member

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    I have a way of dealing with those people.:D At least, those willing to try a little experiment. No-one here must try it though. You might not walk again for days or weeks.

    Have the person stand with their back against a wall, then have them slide down the wall, moving their feet out, away from the wall, until their thighs are parallel to the floor ... exactly as if sitting on a chair, except no chair is there ... then have them hold that position until their legs begin to tremble. Only then let them get up. Then say, "Now THAT is how I feel on a good day."
     
  18. Finch

    Finch Down With the Sickness

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    Martlet, that's a good idea! I used to be able to do that for a long time - probably longer than I can stand up now! It won't give them the total picture, but it's a start.

    Kurt, you make a good point about government. I work for a government agency. At the local office level, we can make a lot of things happen, but we always seem to be hampered by regulations coming from higher up. The people in the highest agency positions basically got those positions because they were friends of whomever happens to be the governor at the time. The people at the next level are often very slow to make decisions and afraid to rock the boat.

    I think that testifying to the CFSAC at the upcoming meeting, written, telephoned, or by actually showing up and speaking, is very important, and I really hope a lot of people at least send a basic written statement. The more the better. The CFSAC is on our side, but this will help our cause more and hopefully will be publicized, especially with the new findings.

    I also believe that in the end Dr. Reeves will fail at whatever he tries to disprove. Once the general ME/CFS population, and those with similar illnesses, begin to be tested, if many are testing positive then nothing he says will be able to stop that. We won't know until we're able to get that test just exactly how far this is going to go, but if it does turn out that there are hundreds of thousands of us testing positive, he will be forced to change his tune. Even if his own testing doesn't work out due to his diluted cohort, he will be shown that he is in the wrong. If he's still in his position, he will have no choice but to change his views.
     
  19. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Actually I think it should be pronounced ex-and. XAND? I don't know if there are any former logic designers here to get the joke.....

    Susan
     
  20. The Phantom

    The Phantom Member

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    I agree with Finch. Eventually, Reeves (& his friend Peter White) will be proven wrong. It's a ? of how long it takes and how much energy it takes. The only reason I'm spending some of my precious energy on the CFSAC is I'd like to see things move as quickly as possible, and I'm hoping that a little extra shove from the CFSAC will make Reeves edge out the door (or fall off a cliff) a little faster. It seems worth a few minutes of my time. There are still 5 hours left to submit testimony to the CFSAC. There are 3 excellent statements on the M.A.D. forum in the Share Your Submissions forum, by Tomk, Caledonia and Sarahg. If you're looking for inspiration, it's all there. After reading them I've added a 4th issue to the much briefer, more pedestrian statement I'm going to send in. Since I can't edit my previous post, here it is:

    4) The proposed CDC 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.

    For what it's worth.
     

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