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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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REMINDER Web presentation today - Dr. Leonard Jason

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CJB, Apr 14, 2010.

  1. Dolphin

    Dolphin Senior Member

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    I believe you mean Dr. Fred Friedberg (psychologist) (as opposed to Ken Friedman)
  2. Dolphin

    Dolphin Senior Member

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    There were plenty of opportunities for individual scientists/researchers to write a letter to an editor to challenge the definition. This can even become a team effort if they ask other people if they want to sign the letter. In our area, so much rubbish goes unchallenged.
  3. BEG

    BEG Senior Member

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    Jenny, Thanks for your undying patience and kind responses to everything that is posted about the CAA on the forums. I don't mean to be obtuse about this gradual versus acute onset criteria; however, I don't believe that money is the motivating factor for that particular criteria. Yes, to limiting it to the patients of 4 highly acclaimed CFS physicians and the other criteria, but I don't believe money had anything to do with the sudden onset limitation.

    Here are two reasons (1) There are more sudden onset than gradual onset individuals with CFS (so I've read on the forums) which would equal even more money needed, and (2) it is becoming obvious that individuals arrive at CFS through many pathways. Somehow, the sudden and gradual onset patients eventually get to the same point. Or do they? There are variances within symptom severity and symptoms exhibited. In other words, we've arrived at the same point, but not exactly. IMHO, I believe that since our end points are so divergent, a unique starting point is absolutely essential for research. Therefore, this particular criteria is not about the money. Gradual onset cohorts exhibit many perpetuating factors. Hats off to the researchers when they need to define those people in a tight cohort.

    I'm going to expand on my hypothetical situation here by saying that since our starting points are diverse, there will not be a one-treatment-fits-all approach. There may not be any treatment for those who have experienced irreversible damage to a bodily system. (Hence, Dr. Cheney and his stem cells.) Perhaps, the most treatable persons will be those whose onset was sudden and infectious.

    In summary, I don't object necessarily to the fact that only sudden onset patients are included; I object to the fact that the explanation just doesn't seem to hold up. I truly believe there is a scientific explanation which is being withheld from us. I could start guessing but that's not my point here. Let the CAA carry on and find something. At this point, who is being picky?:D
  4. jspotila

    jspotila Senior Member

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    Brown-eyed Girl, I am not certain I understand your point. The way I read this, I understand you to be saying that you do not think the BioBank cohort is being limited to sudden or flu-like onset because the Association can't afford to make it broader. I also understand you to be saying that the real reason the cohort is limited to sudden or flu-like onset is being withheld. Am I understanding you correctly?

    Some of these points are covered in the BioBank FAQ: http://cfids.org/cfidslink/2010/040701.asp

    Specifically, the FAQ states, "Our initial group of collaborators is interested in potential infectious triggers for CFS and to facilitate this research, we have drawn a tight circle around CFS patients who might help provide more clues to these particular research questions." It is the nature of the initial collaboration that dictated the sudden or flu-like onset criteria. Why? Because they are looking for potential infectious triggers.

    How does money come into it? The FAQ says, "We anticipate being able to expand the onset criteria as BioBank collaborations and resources permit." When we have money and more collaborators, we will expand the onset criteria for the BioBank.

    Is the Association withholding information from the CFS community? We are abiding by confidentiality agreements that restrict some of the information that we can make public. The FAQ states: "We hope that you agree that adhering to protocols established for confidentiality, privacy and the ethical conduct of research serve the interests of all of us dedicated to advancing understanding of CFS."

    I hope I've addressed your concerns, Brown-eyed Girl. If not, please let me know what needs clarification.
  5. BEG

    BEG Senior Member

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    My concerns have been addressed. Thanks, Jenny.

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