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CDC New Chronic Viral Diseases Branch Chief

Discussion in 'General ME/CFS News' started by shannah, Dec 18, 2010.

  1. floydguy

    floydguy Senior Member

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  2. Marty

    Marty Senior Member

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    Rivka, I absolutely agree with you, on the idea that public objection is a powerful tool. I thought the St. Bart's picketing was extremely effective; the shrinks that went to that meeting found out that the patients didn't support Wessley at all, and that had to at least make them wonder and ask why, so I'll bet they read the patients' handouts. And it was done with only 9 or 10 patients, including an empty wheelchair. The CDC can throw away our letters, but if the press sees public objection, the CDC has to deal with that.
     
  3. markmc20001

    markmc20001 Guest

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    Do what YOU can.

    Hi folks. Glad to see many people here are realizing that waiting, and being nice, with the government is not working or hasn't worked for 25 years. The WPI realized this a few years ago and took action. The WPI is what has brought this issue to the forefront without goverments help.

    Here are just a few ideas I'm trying to generate for what each individual, or group can do now from bed or your local CFS group or wherever.

    May I suggest:(brainstorming here)

    1) Get money to the WPI; DOnate yourselves, ask relatives to donate, write famous and rich people with CFS, autism, and cancer. WPI has skin in the game and real researchers making real success. Keep the money flowing to them so they can keep the indisputable science front and center.

    2) The CDC is using bogus studies for detecting XRMV and delaying scientific progress by not recogzing XMRV. SUE THEM for negligence, sue them for anything you can. I would suggest gettting together with your local CFS group and writing down all the ways the CDC has acted in bad faith and get an attourney to SUE THE CDC/governments into submission. Seems like a good lawyer should be able to come up with a case based on the lack of any meaningful patient results after all these years.

    3) Align with and educate other groups that have better recognition and less stigmatism than the CFS community. Admit that CFS has no credibility based on everything the reeves and UNger have done to dicredit the CFS community. Nobody cares about some older person that doesn;t leave the house or has a few years left. However, the autism community has large numbers of young kids public just can't ignore. The cancer community has lots of people. Lets all try and educate those other groups with letters showing how the CDC has acted in bad faith, and how the testing methods for XRMV are bad, and how XMRV could cause those diseases too. Get other groups to pull with us and make it common knowledge how governments are not working in the publics best interest. POWER AND STRENGTH IN NUMBERS and by awareness.
     
  4. Cort

    Cort Phoenix Rising Founder

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    Interesting...She states CFS is biological illness and then goes onto the mind/body thing...its hard to reconcile. You can say all illnesses have a mind/body component.. FOr instance people can control their high blood pressure using mind/body techniques....but is she talking about CFS like that???? or like its a mind/body illness with a little added extra biology in there?
     
  5. Cort

    Cort Phoenix Rising Founder

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    That's a great idea.......If we could do that consistently we might be able to get more funding...
     
  6. Dolphin

    Dolphin Senior Member

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    You could even have a second go (i.e. another five minutes, or less if you preferred) that day if you wanted as they didn't have many people interested. Did anyone have a third go? Anyway, they even let foreigners speak (and have two goes)! They even let people call for Reeves to be fired. Not sure they censored anything at all - quite a few heated words that day.
     
  7. Dolphin

    Dolphin Senior Member

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    They could be scanned in and added as pdfs if trying to convert them using OCR would not be possible.
     
  8. Dolphin

    Dolphin Senior Member

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    I doubt they will fire her any time soon.

    I think the pressure should be put on the very dodgy definition they are using to define CFS. It doesn't tell us anything about ME/CFS. It is like $4 or 5m is being thrown down the drain in our name each year. Often the results stigmatize us. One tactic might be to say we'd prefer the money was given to other conditions rather than spent on research using the "empiric" criteria (Reeves et al., 2005) - that this would be a better use of taxpayers' money.
    Note: this should be confused with the Fukuda definition - it's far worse than that.
     
  9. Marty

    Marty Senior Member

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    Glad to hear your historical perspective, Marcmc. People here seem to be having a hard time accepting that we have to stop stroking and start striking.

    I've been thinking about the legal avenue, too. I've heard you can't sue the government and we can't sue for no results, since science hides the answer sometimes. We can certainly show "bad faith" and failure to use the science. Would like to hear some lawyers' opinions. We exposed their theft of money to the Congress and won the judgement (I don't know if we ever got the money back; advocacy burned out). Maybe we have to resort to Congress again. These issues must be brought to light if anything is going to change. And with the change in leadership (Unger), we might strike while the iron is hot to demand either radical change in direction of the CDC or termination of their "fatigue" program.

    Roy, are you there?
     
  10. acer2000

    acer2000 Senior Member

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    Usually when an organization elects or assigns/hires a new leader they have a press conference or issue a statement indicating the new direction that they will lead the organization in. They talk about priorities, plans, and goals. I think that we will be able to judge Dr. Unger by what she states her plan is. If she doesn't state one, that says something too.

    One other thing that we need to fix is fragmentation in our patient community. We need research dollars that go directly into figuring out the etiology of this illness. In order to advocate for such funds, we need an effective patient organization that binds us all together. We need an advocacy organization that is actually good at advocacy. We need a way to organize email/letter/phone campaigns We need a group that gets results in terms of dollars and awareness and communicates effectively with the patients and their caregivers. One that solicits donations and puts them to good use and shows results. I don't get the sense that we have that now. We have a bunch of smaller groups and there is a lot of infighting. An advocacy group needs unity. And its only as good as the results it gets in research dollars and public awareness.

    I don't even know anymore... Who is the main CFS advocacy organization? Who anointed them as in charge? And why are they still in charge given the decades of poor results? Who has the power to make changes?

    serious questions.. because I suspect like Cort says... there aren't many letters sent, and when they are sent their message is inconsistent and not very effective. We need that to change.
     
  11. roma

    roma

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    i have a few ideas on how we can get some more attention first, we can contact michael moore this is the guy who has done a few films and some of them have cause some controversy but it seems like he is always fighting against the government, not sure if this would be a good idea due to the fact that many people don't like this guy he is currently still supporting the wikileaks guy this is how you can contact him http://www.michaelmoore.com/submit

    another thing we can do is make youtube videos, but with a different approach grab a video that's gonna be played thousands of times of some famous singer a song that will get maybe millions of views and have captions on it talking about XMRV.

    Finally, we could all go protest outside of the CDC offices i know many people don't have the resources for it but we could still do it, i know it's been done in the past too but now we have good momentum going..
     
  12. roma

    roma

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    i have a few ideas on how we can get some more attention first, we can contact michael moore this is the guy who has done a few films and some of them have cause some controversy but it seems like he is always fighting against the government, not sure if this would be a good idea due to the fact that many people don't like this guy he is currently still supporting the wikileaks guy this is how you can contact him http://www.michaelmoore.com/submit

    another thing we can do is make youtube videos, but with a different approach grab a video that's gonna be played thousands of times of some famous singer a song that will get maybe millions of views and have captions on it talking about XMRV.

    Finally, we could all go protest outside of the CDC offices i know many people don't have the resources for it but we could still do it, i know it's been done in the past too but now we have good momentum going..
     
  13. roma

    roma

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    how helpful would it be for us if some top dog at the CDC got infected with XMRV..
     
  14. markmc20001

    markmc20001 Guest

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    Hey Marty,

    Yep, we got it right. I think many more people here know what's going on too, but are reluctant to comment out of fear they may give a bad impression or something. You know, peer pressure or being "professional". However, it doens't apply for me when literally our lives are at stake. I'm going to speak up.

    Mark
     
  15. Marty

    Marty Senior Member

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    It is possible. The CAA used to be a hero in the late 1980's up to when Marc gave up and the goals changed. We attacked the letter carrier to see if our CFIDS Chronicle had come yet and complained royally when it was late. There was no question that he was working for the patients and we raised all the money we could for our cause. And he did this despite being desperately ill. The administration changed and failed to support patient ideas, became chummy with the CDC, spent untold amounts of money on "lobbying" - you know the story. But that was a different time, before the internet (if you can imagine).

    In a good way, there are places for everyone to be heard today. And maybe there are different strokes for different folks in what advocacy projects in which they want to be involved. And there is a chance for "anointing" by which groups get the most participation. I'd think those can be good things, and the world has permanently changed in this direction. But we probably still need a national organization, not for the distribution of news or education any more, but to be the contact for patient, physician, and media inquiries. We need a standard information package that everyone can use - and support. And we need a professionally produced and daily updated website that can instantly reply to inquiries. We would love to have that feeling of community we had back then. A mother ship, so to speak. Oh it wasn't perfect, of course.

    The need is more for a housekeeping function now, but of such importance that it's crucial. That much could be noncontroversial and vitally effective. Even if the organization also got involved in fund raising, there could be nothing like the criminal salaries reported for the current CAA. (I've asked before if Kim gets something like $160,000; there has been no answer and no contradiction.) Nobody could be expected to give up their own way of doing things in their various groups, but they definitely could use support from a national organization. Many of the old organizations are just out of date; it's a new world.
     
  16. Francelle

    Francelle Senior Member

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    Doesn't it seem like somewhat of an oxymoron having CFS under the Chronic Viral Diseases Branch at least as far as the CDC goes, unless they believe there is a component of truth in it?

    Has it always been under this department?
     
  17. Marty

    Marty Senior Member

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    Couldn't agree with you more, Roma. We are getting some good action ideas today.
     
  18. Marty

    Marty Senior Member

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    "...people here...are reluctant to comment...literally our lives are at stake. I'm going to speak up."



    Yep, Mark, me too. It's my life.
     
  19. markmc20001

    markmc20001 Guest

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    Great post ACER2000. well articulated. Doesn't seem to be much going on in the way of advocacy (that I know of) except for what the MCWPA did recently, and they deserve credit for that.

    One thing really missing from our advocacy organzation would be a freqent webinar where patients from around the world can particpate and give feedback in real time by phone or email. That way everybody can pull together and have a stake. Also would like to see the website with current activies/successes listed with completeion dates and comments section for patient feedback and accountability.

    I'd also like to see some creative viral advertising campaigns thru facebook/ and youtube. Seems like facebook is a powerful way to reach out
     
  20. WillBeatCFS

    WillBeatCFS

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    I agree that stating what we would like Unger to do immediately would give her a chance to show her colors. Number 1 on my list is to get that website pulled down immediately and then rewritten to reflect the full research basis of ME/CFS.

    The current website is biased beyond belief. As the government's "go to" site, it absolutely needs to be balanced and to reflect the entirety of research. I'd rather one that only had my point of view (physical causation) but, OK, their psych stuff could be on, too (though it pains my heart). Balance and all. But, without question, it needs to show XMRV, Klimas' (and others) research on immune dysfunction, etc. Right now, those items are buried, distorted, or left out entirely. Reality is that those studies are what is going to define ME/CFS research in the future, not the TATT garbage that the CDC has been putting out.

    As far as the "treatment" section, the concept of treating symptoms should be highlighted -- it is somthing that can improve patients' quality of life immediately. CBT and graded exercise should be mentioned (again, pains my heart) because they show up in the literature but the severe limitations of both should be discussed. Ought to be a discussion of the impact of various definitions on research, too. Of course, all this would mean the CDC was ready to be honest and straightforward. If Unger does this, she WILL be changing course! (Sadly, I'm not holding my breath).
     

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