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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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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. CBS

    CBS Senior Member

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    I suggest you go back and read the thread.
     
  2. garcia

    garcia Aristocrat Extraordinaire

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    Totally agree bakerscape.
     
  3. CBS

    CBS Senior Member

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    Funny, I was going to comment that there seems to be a predisposition amongst some people here to attack the CAA and then claim that everyone else was being over sensitive. I seem to have this response every time someone pisses on my leg and then tries telling me that it's just raining. There is a double standard and it starts with attacks on the CAA.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The fact that CDC provided a lot of the CAA's 'business' back then and consequently wrote checks for funds CAA allocated partially to its salaries and overhead, means that CAA was beholden to CDC. Since the purpose of the CDC "CFS" program is to obstruct science and persecute patients, this is a conflict of interest.
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree that this comparison is obviously inapposite.
     
  6. Sean

    Sean Senior Member

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    justinreilly says:

    and this

    Plus this from another recent thread:

    The absolute certainty of your interpretations is troubling, especially given the weak evidence base you invoke to justify them.

    Where is your margin for error?

    What if you are wrong? What are the possible adverse consequences of that? Do you bear any responsibility for them?
     
  7. CBS

    CBS Senior Member

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    The CDC has provided funding to the CAA in the past and I do think that this has created issues with the CAA being able to take stances that conflict with the CDC. I wouldn't mind a review of the whole history as well as a statement by the CAA on this. That said (and I have said that I don't agree with everything the CAA has done or is doing) I was very pleased with Dr. Vernon's response to the recent CDC study.

    As for the double standard, I also wouldn't mind a discussion of the double standard that accepts sarcasm and 'digs' that close down communication as opposed to good faith efforts to communicate and correct (see JSpotila's response to questions about CAA comment on a slide presented at the blood safety meeting - "false positives").

    One step further, I know that I've posted comments about subjects like W Reeves and company that wouldn't pass the forum rules. Is this OK simply because WR seems to be a universally distrusted figure in this community? It's not something I'd feel comfortable defending.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't have a problem with CAA's handling of this discreet issue. I agree with CBS that they can't reveal anything passed on in confidence.

    But I don't think Robyn's post was inappropriately attacking CAA. I think forum members should be able to raise questions about CAA and other CFS institutions.
     
  9. CBS

    CBS Senior Member

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    Actually, it's quite apposite.

    In the CAA example you have a lot of people willing to criticize but unwilling match words with constructive action.

    In the UFA example you have a lot of people willing to criticize and unwilling match words with constructive action.

    Pointing out the chasm between their words and unwillingness to actually put up or shut up was the point of the UFA web-site and I applaud them for doing so in such a creative manner.
     
  10. V99

    V99 *****

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    Lots of people are doing and also asking questions. Asking questions is also doing.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think the avalanche of evidence contained in Osler's Web and oslersweb.com, in Mindy Katei's blog and elsewhere clearly leads to my conclusions. I strongly believe reasonable people fully apprised of this evidence would not disagree.

    If I am wrong, of course I take responsibility for my statements. I do not throw such accusations around lightly. It is only after carefully reviewing the available evidence, that I feel comfortable stating these conclusions with certainty.

    How is the evidence base weak? It is very strong and all points in one direction.
     
  12. CBS

    CBS Senior Member

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    It's not the questions that I have concerns about. Not in the least. It when a question isn't really a question but an accusation and an attack.

    Eg.
    I don't get it, how did the CDC arrive at the interpretations they used when citing articles in support of their conclusions that "personality disorders" precede CFS. And was it appropriate for the CDC to classify certain personaility characteristics - that could be an adaptive response to physical illness - as "disorders?"

    VS.

    What a ridiculously self-serving narrow minded load.

    My sense was that no one even considered approaching the CDC with a list of questions based upon the assumption (and deservedly so) that the CDC is pretty intransigent on this. Sarcasm is a sign that communication has broken down and the aim is to belittle, not engage. While we may not all get what we want (or at various times we all are disappointed) The CAA is far from unwilling engage or reflect.

    So in summary, good faith questions ARE doing.

    Sarcasm and snide remarks are doing damage.
     
  13. CBS

    CBS Senior Member

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    So would it be correct to assume from this that anyone that disagrees with you is unreasonable or less than fully apprised?
     
  14. Cort

    Cort Phoenix Rising Founder

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    Justin you're still mixing apples and oranges; there is a distinction between a business ie the CFIDS Association getting contract to run a program; ie the Media Campaign and the rest of the Associations business.

    The contract was to run the Media campaign - but you are suggesting the contract was also to run the CFIDS Association? If so I suggest that you complain to the CDC of the fraudulent use of funds the CAA was engaging in.

    If I paid you money to mow my lawn a) I wouldn't give you more money than was necessary to do that and b) I wouldn't expect you to mow half of it and then use the funds for something else but that is what you are suggesting.

    History has shown that that entire proposition, that the CAA was dependent on funds from the CDC to run its operation, - which never made sense anyway, is false. The Media campaign is over, the CAA is not doing any business iwth the CDC or any other govt entities - and it has come out of the worst recession in our memory in relatively good shape despite having the media campaign money's disappear right smack in the middle of it.



    By the way, this statement
    is not true. Are you really suggesting that the brass of the CDC told Bill Reeves "Your job is to obstruct good CFS science and persecute those people with CFS". Do you really think we are that important to them - that they would organize a campaign to persecute us? And if they did why would they put the hothead Bill Reeves in charge?

    I don't believe the CDC is trying to persecute CFS patients. I think they think that they're right and they think Peterson and Mikovits are wrong, wrong, wrong.....There's no need to create this governmental conspiracy theory....this is the clash between two idea systems in a very big, poorly defined field...what else would you expect at a time like this when so much is uncertain?
     
  15. Cort

    Cort Phoenix Rising Founder

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    :tear::tear::tear::tear::tear:

    that was just too funny. The problems regarding the conversations about the CAA are not 'conversations about the CAA' but the fact that there were what appeared to be sarcastic comments thrown in there. Hardheaded discussions about the CAA or any other group are welcome.
     
  16. Cort

    Cort Phoenix Rising Founder

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    Justin is always looking out for venal motives! He may be right but I hope he's wrong. We just don't know...it could have be done due embarrassment or venal but we will see.....time will tell.
     
  17. SOC

    SOC Senior Member

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    Asking sensible questions and making constructive criticism are postive actions.

    Demeaning, loaded, rhetorical questions; snarkiness; snide remarks; and destructive criticism are negative actions.

    We don't need more negativity -- we have enough with this illness. We, as a group, have too little energy to waste it on pointless negativity.

    All that's being asked is that people stop making rude, snarky, snide remarks and unsubstantiated accusations -- no matter who they're aimed at. When they're aimed at our allies, even when we don't agree with everything they do, is small-minded and destructive to our progress with this illness. If I was outside ME/CFS circles and was considering getting involved, that kind of attacks on people trying to help us would put me right off choosing this group to help.

    Rude jokes are still rude. Jokes in bad taste are still bad taste. Been there, done that, and taken the consequences. I was grown-up enough to acknowledge the bad taste of my "joke" and delete it. So have other people. You could, too. But it's your choice.

    I haven't heard anyone say that constructive criticism of the CAA is unacceptable. That is not, and never was, the point. The point is to stop destructive behavior that only damages our allies and our image and replace it with constructive behavior that forwards our cause.

    CBS is a much more capable speaker than I am, so I've not been as heavily involved in this discussion as I might have been, but I'm here and backing CBS 100%.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I realise the contract is over. I realise that when it was going that it was only to do the media campaign and the funds were only used for that. I am assuming though, that some of the money from the CDC for the campaign was put by CAA toward its own overhead and to pay employee salaries. If this is true, then the 'don't bite the hand that feeds you' problem comes into play, ie that the danger of a bias in favor of CDC (conscious or subconscious) was created.

    No, I think we were an object of ridicule to them in the beginning and they took the money that was supposed to go to us and used it for other diseases. Once the first dollar was misappropriated, and they started lying to congress about it, they had to maintain an aura of incrediblity about us so that noone would believe us when we said that they've been taking all the money and ignoring this communicable disease. They accomplished this by painting us as hysterical. This included some Reeves' superiors in the old days- Brian Mahy comes to mind- and Reeves up until the present.

    I do not think that CDC head Tom Freidan is trying to persecute us. I think he just doesn't believe or want to believe that people at the CDC are and were capable of doing these evil things for so long.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    On the point I was making that CDC and NIH have generally acted in bad faith toward us, yes.

    Do you think CDC and NIH have honestly been trying to help us over the past 25 years?
     
  20. V99

    V99 *****

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    How can we possibly know what the CDC or any other organisation is thinking. We would be naive to not entertaint the possibility that this is deliberate.

    As for sarcasm and humour, they are therapeutic, and sometimes convey more than just the bare facts of the case. Which also can be of value. Patients with other diseases will use such things, but that is not why people have refrained from helping us. That would be propaganda and prejudice.
     

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