1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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What's old is new again? - Amazing video from 1996

Discussion in 'General ME/CFS News' started by Lesley, Mar 7, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Koan,

    Thanks for your kind words! They are very appreciated.

    I understand what you're saying. The pilot research does a lot of good and needed to be done by us in the early years or noone would believe us at all, absolutely no question. It seems to me though, that by 1996 with the publication of Osler's Web or in 1999 when the GAO and HHS inspector general confirmed CDC misappropriation and lying to Congress and NIH and CDC generally being underresponsive to the epidemic, that we had enough evidence, historical (of CDC and NIH malfeasance) and medical, that a reasonably effective lobbying and publicity effort by a national patient organization should have succeded in getting funding up to appproriate levels ($300M/yr to NIH) and the focus of the research and educational efforts on biomedicine. (sorry for the long sentence; I am too out of it to edit). It is clear to me that it should have been accomplished by then; we had enough credibility.
     
  2. Koan

    Koan Be the change.

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    I so hear you Justin, loud and clear. We have had enough actual evidence for a long time but the planets don't seem to have aligned, metaphorically speaking, as they have now.

    But, yeah, what you said about everything -- if we don't use this momentum, we will be making an inexcusable blunder.

    If this is you out of it, you must be positively scary when you're in it!

    Carry on!
     
  3. dannybex

    dannybex Senior Member

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    Yeah, I don't understand either. If Defreitas' retrovirus was so important 15-20 years ago...why has it lost it's importance since the XMRV discovery? Does it not exist anymore? Did it simply just go away with time...?

    I'm kind of troubled that the WPI seems to dimiss it so easily and doesn't seem interested in following up on it...but I'm so out of the loop perhaps I've missed some news.

    d.
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, I have different view. The way I see it, we got XMRV through largely private funding. As private funding finds things, the public funding will come. NIH & CDc will come because they don't want to be left behind. Let them come to us. All that money for over 25 years in lobbying has only brought token research with no real findings and the research in the wrong direction. It has been tried and it didn't work.

    Money should go to private research (which now is a whole lot since the XMRV finding) and cooperation with other research for other illnesses that already have money we can tap into. As has been said, evidence has been there for over 14 years. Yet, no change.

    And lest we forget that even when Congress did give them money for CFS research, they spent it on something else, illegally. You can't make a man see if he chooses to keep his eyes closed.

    Only when we make enough noise in media reports of findings through other labs will the CDC and NIH, say, "Hey, we need to be involved in that."

    And, Koan, you are so right. And this has been on my heart for a long time. I would say DeFreitas is a martyr as far as her career.

    Biggest hero in my book is Peterson. I just think about how he went to this wealthy town, set up a cushy little practice, hoping to see the colds and arthritis. Skiing is good, quaint town, ahhhh, life is good.

    But then CFS hit. And what did he do? He gave up his reputation and money in a duty to his patients. I see him now and I think of him as just being resigned that fate dealt him a bad hand, and his character would not allow him to abandon his very sick patients. And in the process, he became like leather. He doesn't care for the news media, he doesn't care about what other doctors think, and he gave up on making lots of money. All he cares about now is whatever can be done for his patients. He is a man with a mission and to hell with everything else. He gave up on getting anything else out of this world years ago. He doesn't seem to have much of a sense of humor, now.

    Now maybe I have him wrong, but this is the impression I get.

    Think of it this way, many of us have lost the life we thought we were going to have, all the plans we made, with circumstances imposed on us that we did not choose.

    But Peterson lost the life he thought he would have by his choosing to serve his patients. At any time, he could have left us and chosen to leave this situation and go set up practice somewhere else with the money and simple patients. And this is over decades.

    Please, anyone know a screen writer? A movie needs to be made about Peterson.

    Tina
     
  5. gracenote

    gracenote All shall be well . . .

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    I think one of the reasons that XMRV is getting more attention is that it had already been discovered in aggressive prostate cancer. There already were scientists studying it before the ME/CFS connection was made. It causes CANCER.
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes! And WPI did it with NCI and CC; got published in science; WPI was prepared in other ways to deal with it (it was not a lone scientist/employee with no funding), ME/CFIDS is a bit more accepted now as a real physical illness and WPI found it in 4% of normals. Even if they don't care about us, they will care about a retrovirus in the general population.
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA needs to hire Hillary Johnson to write copy and reach out to media

    Sounds like you know more about this history than I. Query, though, as to how much money actually was spent on lobbying and media outreach and did they do it effectively? Judging by what I perceive of their lobbying and media outreach in the past several years, I don't think they spent enough or did it effectively.

    One big thing is media. Of course they can't prevent every media outlet from saying "Chronic Fatigue May Not be Malingerers" and the like, but there is relatively little news coverage and rarely a substantively accurate article. They put out CDC type misinformation or at best pablum truths that don't get media or readers interested. Stuff on the order of 'CFS can interfere with daily activities and symptomatic treatments are sometimes effective.' Yes, true, but if this is the quote/info from the CAA, no media outlet is going to base a story on these boring, mealy mouthed truisms. And if this type of quote is included in an article, it gets drowned out by the outrageous fabrications of 'the opposition' like 'it's unfortunate that some patients are resistant to the only therapies that can help them: CBT & GET.'

    CAA needs to seize the offensive by putting out the truth in an interesting way. Not embellishing, but simply pointing out all the horrendous true stuff that characterizes how we're systematically abused by NIH, CDC, UK NHS et al. Simply saying something like 'It's too bad doctors haven't widely recognized this illness until lately' is ineffective. It has to be something specific that illuminates the ROOT CAUSE of the problem such as "CDC and NIH have consistently and knowingly misappropriated funds, lied to Congress and the public and ignored an epidemic of a devastating neuro-endocrine immune disease.' Basically, have Hillary Johnson write the copy. Seriously.

    If they spent a moderate amount of time and money on trying to interest the media, we would start seeing Osler's Web type stories in the mainstream media. The media wants to run scandalous stories of the big guys kicking the little guys. This gets readers/viewers.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hero Needed to Run CDC "CFS" Program

    Very true. If we got them a ton of money, they would still spend most of it on crap. That's why I now think the main thing we have to hammer home to everyone at CAA, CDC, HHS and Congress is we demand a knowledgable outsider with the executive skills to get the job done be appointed as the permanent replacement for Reeves. Not an ostensibly well-meaning insider. Someone on the order of Dan Peterson, Paul Cheney, Nancy Klimas, Leonard Jason, etc. Everything else will flow from this.

    Peterson and DeFreitas are true heros! Cheney too, from what I know. He and his family almost got evicted from his home and his marriage fell apart, according to Osler's Web. Klimas; there seem to be quite a few. To me, also Malcolm Hooper. He is retired and does not have to put up such a fight. And, to me, Hillary Johnson. I can't believe she wrote OW with ME. We never would have known the sordid truth of CDC and NIH without her. CAA would have put forth some of it from their investigations, but it would not have had the resonance and impact.

    There should be a drama based on Peterson!
    And a professionally done documentary like "Under Our Skin" (on Lyme). "I Remember Me" was great, but not cinematic enough like Under Our Skin.
     
  9. oerganix

    oerganix Senior Member

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    Reeves' replacement



    I'm exactly on your wave length, Justin. Thanks for telling it like it is, or at least how I see it.

    So, maybe in this information lull-time, we should be getting up a petition, or at least a debate, to ask Kathleen Sebelious or whomever is responsible for hiring Reeves' replacement, to choose OUR choice. I think it should defininetly be an outsider.

    What about Dr Bell?

    I'd be happy with any of the above named heroes and heroines, but let's at least notify HHS that we have an opinion and we want a proactive person in there ASAP.

    RE: CAV, I read somewhere it was an enterovirus, or maybe a spumavirus, not a retrovirus, WFIW.
     
  10. JayS

    JayS

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    You commented on her blog

    http://www.oslersweb.com/blog.htm?post=648635

    that would lead me to believe this will never, ever happen. Even if they wanted to.
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    just in

    Just in, you make a point that now may be the time to lobby for someone to be at CDC over CFS that understands the true nature of the illness. Honestly, who would want it that we would like? In reading Osler's Web, even those who were honestly open minded at CDC found themselves in a very frustrating situation. Maybe one is out there. I bet Dr. Bateman, who commented at the CFSAC meeting about the difficulties she is having in her practice, might be interested. And she has the gumption (what I call it when it is a woman) to not put up with nonsense. But Klimas, no. Peterson, no. I can't see any of these guys willing to go into that government bureaucracy with all the rules and limitations. The only limitations they have now is funds. In CDC, it will be a lot more.

    I think all these folks feel like me- so much more can be done in private sector. Funding issues will likely be similar, based on past 25 years of experience.

    Bell, I think he is looking for retirement. While interested in being a part, I can't imagine he would want to go to the eye of the storm.

    I could be wrong.

    I don't have the exact figure on lobbying. I do know that CAA took the approach to lobby Congress. I remember in Osler's Web that they had a lobbyist who tried to get personnel changes, particularly Strauss. Congressmen said they are hands off on that. Tried to get more funding for studies. Congress said they don't get into telling scientists how to do their job. Now, some lobbying was effective. Congress did give more money for CFS research and even said how many man hours were to be dedicated. The lobbying worked. But again, CDC did not do what Congress mandated.

    So your point again that it is more important to get the right person in CDC than lobbying is a good point. But we did have someone good, the source for Osler's Web. But he could not win against the overwhelming bias there. And so his years with CFS was full of politics and frustration.

    That is why I say that results is what will bring them to our side. Money didn't change it, having a good guy in there didn't change it, lobbying didn't change it.

    CAA has taken the approach you have that lobbying the government will be best to bring in big money and change the opinions of clinicians. That is why they tried cooperation more than adversary. But their effectiveness has been limited. (but as noted, they did get Congress to give more money.)

    And to be honest, I think CAA realized that too, as evidenced by their hiring Vernon and moving on with more of their own research. They cut ties with CDC on advocacy, after over two decades of trying.

    I just say let's support those who are getting us results. As more results come, the others will follow.

    Agreed about media. I have tried by contacting 60 Minutes and a fellow freelance writer who writes for health magazines. So far, no results.

    Tina
     

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