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IASCFS/ME - Science and the Hold on XMRV Studies

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by V99, Jul 30, 2010.

  1. judderwocky

    judderwocky Senior Member

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    I think part of it is just jealousy as ive said before.... Switzer has speant years looking at retroviruses and trying to do what the WPI did... his research shows a passion for trying to link retroviruses with human disease... especially new retroviruses.... i think its the same whenever anybody does something amazing the first time... a lot of people that tried but failed to do it like to punch holes in it ... i mean think about it... this upstart group does it after poking around for a couple of years... they had been doing it for longer and never managed to get those kind of clear results and have them published in that reputable of a journal... it must have irked some people. the original science paper was just so well laid out...

    "Bill Switzer, MPH, currently leads his branch in the study of simian retrovirus emergence among people who are exposed to primates during the course of their work and is a well-recognized authority in the field. Switzer joined CDC in 1986 but had been interested in its work since studying public health microbiology as an undergraduate.

    He was instrumental in documenting simian foamy virus infection in a natural setting among primate hunters in Cameroon, showing that simian retroviruses are actively crossing to humans. This work was published in Lancet and has received considerable recognition by media and scientific outlets. Switzer said he is proudest of his work in this area along with identification of two other new human retroviruses, HTLV-3 and HTLV-4 (human T-cell lymphotrophic/leukemia virus types 3 and 4), which was published in PNAS in May." -- cdc website

    is his page on the CDC... but none of those are associated with the prevalence of CFS... 17 million people worldwide is just huge..
     
  2. CBS

    CBS Senior Member

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    V99,

    I wanted to say something at the time of your first comment and I didn't. I should have. I was dismayed to read your original comment as it seemed like a cheap shot at the CAA and not a serious attempt to initiate dialog or to discuss a particular concern.

    Your response to Cort's genuine attempt to provide background on the issue confirmed my first impression.

    There is a forum where this is tolerated. I have appreciated a large majority of your comments on PR but might I suggest that when you feel the urge to interject snark and sarcasm into a thead you post it on a different site.

    As for serious inquiries and concerns about anything the CAA does, I have no issue with doing that and I feel strongly that there needs to be a room on this forum raise issues with all advocacy organizations.

    However, as you said yourself, your comment was not intended to produce anything constructive.

    Shane
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA is offended. Please!

    Happy that CAA is attacking the CDC study and calling for the publication of the NIH/FDA paper.

    Regarding your taking offense: give me a break! CAA has well earned such comments. IMO, It is insulting to patients that you claim to take offense.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't have any issue with how CAA has handled the 'rumors'.

    I believe strongly we need to voice our greviences. I really fail to see how letter or email writing is not the right tactic for most of our issues including this one. I think this is basic advocacy.
     
  5. SOC

    SOC Senior Member

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    I was trying to stay out of this, but honestly justinreilly, that's really uncalled for. It is not a FACT, but rather and OPINION that the CAA has earned such comments. Just because you don't agree with how they perform does not automatically give you the right to violate forum rules about courtesy. CAA workers have every reason to be insulted by the, yes, insulting comments posted here.

    Cort has given clear statements about the good things CAA has done for us. I agree with him. Apparently the CAA hasn't done what YOU want, but it doesn't mean what it has done is bad.

    Why are people expecting a small organization with a small budget to do everything everybody wants from support organizations. If you want an advocacy organization that is different, create one. Maybe we need one whose entire focus is PR, for example. Maybe we need one that is more militant. I don't know. But if you do, quit complaining and make a new organization. If it does everything the rest of us want from a support organization, we'll refrain from insulting it. ;)

    It's easy to point fingers and blame other people for our predicament, but if you have to do it, at least attack our enemies. Let's be glad for what our allies ARE doing, even if it isn't everything we want.
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Editor: Message deleted for personal attack and offensive comment.
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I recognize that my opinion of CAA is not a fact. I don't understand what you're saying here.

    I'll liken this to the more extreme example of Wessely claiming to be offended on behalf of his "CFS" patients that other patients were stating that his patients were not true ME/CFS patients. This statement of his was disingenuous and itself was clearly insulting to pwME.

    CAA is nowhere near the level of Wessely. They have done some good for us. But I think this extreme example illustrates my point that I consider Jennie's 'taking offense' as itself offensive.

    I dream of starting a patient advocacy organization. Unfortunately I am disabled with ME and have as yet been unable to do so. FWIW, I can state with certainty that if I were healthy I would do a much better job of running CAA than the current CAA leadership and so would many pwME here.
     
  8. CBS

    CBS Senior Member

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    Yep, I take offense too because we have all seen where this leads. Please feel free to feel insulted.
     
  9. CBS

    CBS Senior Member

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    It's not constructive criticism and honest attempts at bettering the situation that offend me. It's the sarcasm and biting comments with no other intent than to insult.

    I agree with SickofCFS. The CAA is a small organization who on balance, in spite of not being perfect, have done far more over the years than any other organization. and believe it or not, the CAA is staffed by real people with feelings who are doing what they feel they can for ALL OF US.

    Several months ago there was a lot of talk about just staring up a new patient advocacy org. or the other advocacy orgs that were going to step forward. I'm waiting.

    Justin, your an attorney. Just to put this into perspective, my wife's firm (mid-sized in a relatively small city) has 20-30 times the number of employees (and partners) as the entire CAA and about 10-15 times the annual budget! I'm sure they would welcome the help. I'd be a lot more impressed if all that sarcastic energy went into doing something constructive.
     
  10. akrasia

    akrasia Senior Member

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    My guess is that people want the CAA to be more aggressive and inflammatory in the advocacy area and because they are not being more aggressive they are coming up with reasons why.....one of which is kowtowing to the government. I think the CAA believes they are working in the best way possible - for the patients. They are trying to achieve results...they want to achieve results - that is their focus and they do actually achieve results - not as many as we would wish but they do..
    -----------------------------------------------
    Cort, why do you frame the wish for vigorous, passionate, intelligently adversarial advocacy as something "aggressive and inflammatory." I notice you use the same language when discussing Judy Mikovits. Is there something about this that makes you personally uncomfortable?

    Good leadership, particularly with an illness like ours, requires the ability not to shrink from confronting cruel and demeaning treatment and representations. The CAA has never embraced the sickest among us, never acknowledged how marginal and powerless this population had been rendered by very powerful forces.

    I don't want to get into the endless CAA discussion with you. Nelson Mandela said what he did when the ANC had triumphed, not when he was in prison. History is not something to be transcended but lived through creatively. Transcendence often means bypass and repression. The history is what it is. Many of us believe that the CAA has acted in ways that are not in our interest. These things have been outlined in very long and detailed threads. Without the WPI, the endgame was almost in sight for the dark forces. They had the NIH and CDC in their pockets, the DSM V was about to embrace the diagnosis of cfs as a functional somatic syndrome, and the ICD listing of m.e. was in great peril. And then a miracle occurred.

    Advocacy is not some default setting. We are not simply stuck with the CAA because it's there. Good will and trust are built over time and I don't think the CAA and its leadership are people who inspire that kind of trust

    Knowing one's history is not the same as being trapped by it. And as for the future, no one knows where this wild ride is going.

    ---------------------------------------

    Its a community that is steeped in its history - that lives in its history - no knock there - there's not alot of positive stuff going on :) - but still that means there is not alot of attempt to transcend history and build a positive force for change. To some extent you have to do that...you have to give up your gripes and anger in order for something else to show up. Nelson Mandela did that with S. Africa; he declared this was a new day. We're still in the blame mode - we're not in the 'fixit' mode. We don't have a vision for the future we're working towards.[/QUOTE]
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    They're just fellow pwME who are letting off a little steam. So CAA takes offense at some patient remark but rarely takes offense at our oppressors like CDC, NIH, Wessely et al.? This is irritating.

    I am not going to pick a fight with the CAA strategy re the FDA/NIH paper of not creating a public commotion because DHHS has once again wisely played the science publishing game to its advantage. If we create an uproar, then DHHS can pressure PNAS behind the scenes to reject the paper due to pre-publication publicity and if we don't say anything then they get more time to fudge things or just more time for its own sake- delay is a main strategy they have used against us very effectively.

    I do take some issue with the tone of the the comments re the publication issue. They come off as- "quiet down patients, you're causing the scientists problems; you don't appreciate how this works, proper science follows a deliberate timeline and you can't talk about it." This is an inappropriate tone.
     
  12. judderwocky

    judderwocky Senior Member

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    The issue is not their size, but how they are using what is available to them.

    The letter writing campaign makes sense. Their inability to acnkowledge this still floors me. They should have at least been on board to generate more media attention and get more people involved in their organization. They failed to capitalize on a critical moment in this research. Other organizations that have capitalized on it will be better off with patients donating.

    For the record, nobody ever really addressed my issues with funding:


    If a patient wants to give money that they know will be spent on XMRV and they (the CAA) have not funded any xmrv studies, and the pharm study wasn't actually funded by them... then if i donate my money to the CAA , my money is still technically not going directly into XMRV research... at best an portion of it is indirectly going to these studies... i can't find any evidence that they have directly sponsored or donated their money to XMRV specific, or Retroviral research...

    (as an aside, the WPI specifically hired retro virologists because they the intention of looking for those types of pathogens)

    They are losing donations to organizations providing more direct routes to the types of research people want to see now.

    There was nothing inflammatory about the letter writitng campaign.

    The CAA's defense at this point is becoming reactionary. They have made mistakes and keep trying to shift the blame around.

    Additionally, relying on accomplishments that the CAA has made years ago really doesn't change how they are continuing to deal with this now.
     
  13. SOC

    SOC Senior Member

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    Just because you don't like it, doesn't mean it isn't the truth.

    Some people are causing the scientists problems. Many of us don't know how this works. Science does follow a deliberate timeline. So they're telling the truth. Doesn't sound like a problem to me.

    No one said you couldn't talk about it. :rolleyes:
     
  14. Sean

    Sean Senior Member

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    It is probably past the point where they have much choice about it. All they can do now is be as prepared as possible for if it happens.
     
  15. judderwocky

    judderwocky Senior Member

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    I have worked in a number of science labs. There is nothing normal about what has happened. Scientists in the field have repeated this. This kind of intereference is not "peer" review.

    Of course they could just go on the record and tell us what really happened... but doing so would force them to admit their is a situation they created, which they don't even want to acknowledge in the first place.
     
  16. CBS

    CBS Senior Member

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    I've heard enough to not have the same worries regarding a plot to "fudge" the data or that the FDA study will be suppressed. The editor in chief of PNAS (Schekman) has said that he expected it to be a matter of weeks. Does that mean that the CDC has acted fairly or in good faith. Not in my opinion. The CDC's request to hold the paper just long enough to place further requirements on the NIH/FDA group was bush league but also consistent with their previous actions. As Dr. Bateman said in the XMRV webinar, it was her opinion that the delay was actually making the to be published paper less vulnerable to criticism. That said, in my opinion the hold was completely out of line but it appeared to be just what the CDC wanted.
     
  17. judderwocky

    judderwocky Senior Member

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    If this is so normal, and there is nothing to worry about, then why don't we hear these stories all the time?

    When else do you hear about the government holding studies back like this ????

    This made the national news because it doesn't happen often... that alone should be a signal to expect a different set of circumstances about how the paper is being treated.

    Also, mentioning that it is in the journals hands now says nothing to whose it was in before his!
     
  18. judderwocky

    judderwocky Senior Member

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    According to the NYT article, they seemed to have gotten that impression.

    You can look up the quote from the PNAS editor, to my knowledge nobody started writing him letters until i put it in the campaign. And apparently it had an effect.
     
  19. judderwocky

    judderwocky Senior Member

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    Uhh. Yeah. I thought I made that clear. If they (DHHS) are going to intrude on the scientific process, they owe it to the scientific process to be very clear about exactly why and how they are making changes. Thats called playing fair. You keep trying to couch this like its just me. I could point to the long list of articles and scientists who are commenting this on blogs.. but hey, you have google search.

    Frankly, the fact that there are so many reporters with so many versions of what happened should also be a red flag.

    It might be in the journal's hands NOW... where was a week ago... where was it the day the story broke.... i want to know exactly what happened and why.

    Look, it goes beyond CFS... the government is being accused by scientific groups of interfering in research along several other fields of research...

    I think its pretty clear it happened as well.

    Why not link some of these ideas together in the media? Why not show the media how we have been consistently oppressed and held back by these government organizations that refuse to see the illness?

    Why play THEIR game.

    The most appropriate thing I think we could have done , was to force them to be immediately honest and clear about what they were doing and why.

    If there was nothing to hide, they wouldn't be slinking in the shadows.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm sure Annette Whittemore's quote in NYTimes "I blame CDC for this mess" set CDC even more against us, if such a thing were possible.

    I didn't know Switzer was hot on the trail of human retroviruses. Great, but it's discouragaing that even he is biased against us.

    DeFreitas said her retrovirus was most similar to Simian D Virus. John Martin's virus was a foamy (Spuma) retrovirus or rv/HHV hybrid. Just throwing that out there.

    It is very clear that newly emergent viruses and mutating old viruses are afoot because of globalization, lax public health services, deforestation, etc.

    One of the big reasons DHHS wants to delay the paper is the finding of other MuLVs in their study subjects!
    This is explosive stuff in addition to XMRV proper.
     

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