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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. V99

    V99 *****

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    As for the post I made earlier. Well, that's how you read it. It is not what I meant.
  2. V99

    V99 *****

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    Use another snake
  3. George

    George waitin' fer rabbits

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    But will the snake eat the other snake eggs? cause I want to move them out to the field I don't want to kill the little guys.
  4. V99

    V99 *****

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    Can you use the end of a vacuum cleaner? Obviously, one with a nozzle that is smaller then the eggs.
  5. leaves

    leaves Senior Member

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    IEKS !! Do you have a snake in your house ??!!
    :scared:
  6. V99

    V99 *****

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    Are the CFIDS Association not allowed to post this statement in its own section? and it's called IACFS/ME
  7. V99

    V99 *****

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    Yessssssssssssssssssssssss
  8. leaves

    leaves Senior Member

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    yikes... Brrrrrr
    Then to think I am already freaked out by this little mouse that is unwilling to move out despite all my efforts.
  9. V99

    V99 *****

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    Hey, I know someone with a snake that could scare that mouse away.
  10. leaves

    leaves Senior Member

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  11. V99

    V99 *****

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    My apologies, it is in date order. However, it is poorly formatted, and still needs its own section on the XMRV page and Facebook page. Again, I will ask, is the CFIDS Association not allowed to post this statement in its own section?

    It is also the IACFS/ME.
  12. jspotila

    jspotila Senior Member

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    Apology accepted, and no lasting harm. It's up to you and the moderators whether the post should be deleted. I appreciate your kindness, George.

    You raise good points, George, which I would like to address. But I also don't want to threadjack. I will say that the Association does not engage in rumors. When the Association makes a statement, it is based on factual information received. Sometimes, a source does not want their name associated with a statement. The Association balances between giving as much information to the community as possible while respecting confidentiality when appropriate. The Association takes strong stances on many issues, and chooses the tactics most appropriate to a situation. Letter writing campaigns are not always the right tactic.

    Every organization that is working on behalf of CFS patients should be held to a very high standard. The Association strives to meet that standard, and I hope we can rise in your opinion.
  13. George

    George waitin' fer rabbits

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    Hey guys
    Sorry for hijacking a really good thread with the snake eggs question.

    JSpotilia - I do give major kudos to the CAA for all of their efforts. Of all the Patient Advocate Organizations the CAA impresses me as working the hardest to do the right thing. It's on me that I only give the CAA a 6 out of 10. If I wasn't so dang sick I'd pitch in and show the CAA how it's done. (big grins) Thanks for your graciousness.

    On the snake and eggs. Yep snake came in a coupla days ago and laid about a dozen eggs. Good snake too a king snake that eats other snakes and mice and bugs. So I consulted my ex, lured snake out by shining a flash light on her. Then wrapped the eggs in old birds nest parts and a light clean cloth so that they could be move without being exposed to sunlight. Stuck them under the shed they should be o.k. there. So snake problem solved. But really I could probably find the momma and send him your way leaves. (grins)

    Love the Yesssssssssssssssssssssssssssss V that was a good one. (snicker grins)
  14. V99

    V99 *****

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    Shall I ask in a different way.

    Jspotilla, why can the CAA not post the statement from the IACFS/ME on their Facebook page under 'The CFIDS Association of America' tab? Are they not allowed to?

    Also why do the CAA not make it clear that they are referring to the Canadian criteria in this section of their Facebook page?
    It is crucial for an advocacy organisation to provide clear up to date information. By not putting the statement from the IACFS/ME on your main Facebook tab, you are communicating that the IACFS/ME is of no great importance.
  15. muffin

    muffin Senior Member

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    I liked the snake egg posts. Where is the Momma Snake then? Maybe those eggs are no good given that the Momma snake has not been on them to keep them warm. Though I know about as much on snakes as I do about virology. I do know $h1t about $h1t though - 4 dogs and 5 cats says I am expert on that!

    I hate saying this: WE must be the ones to push. Were it not for the Whittemore's and their sick child, we would be stuck back in previous decades, regardless of what these Advocacy orgs do or have done for us. Sad but so. I'm sure these orgs mean well, but, what really has been done in the last decade for us? Funding for real research from the Hill? Taking the CDC/CFS program/Reeves down? Really, I think that WE took Reeves down with the constant screaming about him and the CDC/Frieden may well have known we were right. I will give credit to the CAA for taking a really good shot across the bow at a conference when they went after the CDC/CFS people for wasting money. Now that was GOOD. But again, WE, the sick, must be the ones to do our thing. We must fight, it's just that simple - I think anyway.

    What earmarked charity money you have should go to WPI and PR. Sorry CAA, but it is the WPI, the Whittemores and Mikovits, et al that have done us the most good in the least amount of time. So that's where my very limited "charity" funds have to go. Kills me to use that money for research, a government job paid for by my taxes, when I would rather spend that money on helping dogs/cats and getting them "fixed", stopping abuse, and finding them true loving homes, etc.
  16. George

    George waitin' fer rabbits

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    Hey Muffin
    Snakes don't have to sit eggs. They lay em and slither off. (grins) But it's important that the eggs stay covered and not in direct sun light. I . . . ehem. . . checked one of the eggs to see if it was . . .um. . .viable. It was. So I put them under the shed where they will be safe and hopefully hatch and have good snakey lives.

    Yeah, the bad thing about any Patient Advocacy Organization is that there can be a type of think that "the patients are too ill, we know what's best for them". I think in some respects that this has happened with the CAA. My impression, and it's only my impression, is that the folks who are in charge are more likely to listen to the government agency's in a effort to keep on the side that the bread is most buttered. Do I see genuine concern on the part of the CAA for their patient population, to a smaller degree, yes.

    There is a balance that has to be struck within any organization like this between the patients and the government agencies that are most likely to fund the work that will help them. Right now I find the CAA's policies to be more heavily skewed towards government policy's than to patient concerns. Hence the lower star rating. (grins) I also, resent this attitude. While I am grateful to much of what the CAA has accomplished I believe that the group is at a difficult turning point. The face of ME/CFS advocacy is changing rapidly just as AIDES advocacy began to change in the 1990's. It's up to the CAA to make the necessary changes to their advocacy style in the face of those changes. Part of that change is to listen to the patients and make sure the patients are being cared for in an open and transparent manner.

    There has been nothing open, honest or transparent about the Alter Paper suppression.
  17. shrewsbury

    shrewsbury member

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    This is so well put George. Thank you. I believe you speak for thousands of us - not just yourself. Well - for me anyways.

    To further the point that the CAA should have a strong position on the withholding of the NIH/FDA paper and should publish both their position and the IACFSME position paper on their Facebook page themselves (and not only through having 2 responses to a post in the comments section - you have to click "Others" to see it).

    This morning a post was made (at about 11 am) to the CAAs facebook page:

    2 hrs later The CFIDS Association of America posted (about 1 pm)
    And an hour after that: (about 2 pm)
    And 3 hours after that (about 5 pm)



    ps - congrats on having good snakes George
    pps - did you have that egg scrambled?
  18. valentinelynx

    valentinelynx Senior Member

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    Hey, cool about the snake. I have a kingsnake friend, too. She came in last October to the kitchen and hid, yes, under the refrigerator. Oh well, I thought, I won't see her again. Well, later that night.... (snake squeamish might not enjoy this...) I was taking a bath, thought about the snake, looked up and THERE SHE WAS, gently gliding into the bathroom. The bathroom was about 50 yards from the kitchen! So, I figured she wanted to stay awhile, caught her and put her up in a nice snake apartment. She was very young, not much more than newborn, I think. She's doing great! Much better pet than the baby rattlesnake we caught just outside the kitchen door a few weeks before Ms Kingsnake showed up. Or the 5 foot Big Mama rattlesnake who visited the yard earlier that summer. Boy, did she rattle loud! Enjoy!
  19. free at last

    free at last Senior Member

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    Everything you have said here v99 is so completely 100% correct that im amazed more scientists are not coming out and saying what gives with this behaviour, Its so obviously biased towards withholding positive information and releasing negative information that cover up really doesnt seem such a silly idea anymore. Untill a positive release of the NIH paper actually transpires we have nothing 0, I know some have turned my arguments on there head, when i suggest they would not be behaving like this, if they knew a positive paper was just around the corner for release, that for all the world it really looks like when the NIH paper is released the extra experiments perfomed ( yes asked for by the publishes, worringly irrelavent ) will show a about turn from the already leaked information, is it really a coincedence that 1 the paper was put on hold, 2 the CDC release there negative findings, and 3 extra experiments are asked for ( i dont care it was the publishes who asked for this, they could have been advised by the CDC, Extra experiments that could now show a problem with the earlier findings. I think were in for a shock folks, i think its a coverup, i think the NIH paper will somehow do a u turn, And i think everything that v99 has said here really kind of proves it. I just hope im wrong. But if im not There is going to a be a lot of angry ME CFS sufferes posting on the net in a few weeks. And you know what i bet if this really happens ( NIH u turn ) They will all just plain get away with it, they are the elephants, we are the mouses yeah probably with XMRV
  20. JT1024

    JT1024 Senior Member

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    RE: On a personal note: I am more than happy to answer questions and consider constructive criticism of the Association's work. But I really would appreciate common courtesy instead of comments like "ROFLMAO, Working with the gov'ment? " or "Are they helping the CDC perfect that test that finds XMRV in fake samples?"


    I'm not on here often but it is pretty apparent.... Courtesy is extended when interests are not in conflict.

    George... you are more than informed IMHO... keep pursuing the truth.

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