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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. Dolphin

    Dolphin Senior Member

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    One problem for the CAA is that Suzanne Vernon is one of the authors of the "empiric" definition.
  2. Dolphin

    Dolphin Senior Member

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    I think you make some good points in your post.

    But with regard to the CDC, the figures could be a lot worse than 20% to 2%.

    It could well be the case that around 10% of the Georgia sample would satisfy the Fukuda definition - see http://forums.aboutmecfs.org/showthread.php?p=15546#post15546

    Also the way the CDC does studies, it seems to exclude people who can have useful signs e.g Romberg sign.

    So it could well be the case that it's say 7% vs 4%. Which would be hard to explain to an audience unless they accepted the CDC definition was flawed. Which won't necessarily be clear by the way the CDC tends to write its papers (it says it is operationalizing the Fukuda definition).
  3. hvs

    hvs Senior Member

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    You're totally right one, George, in many ways. Legitimate researchers will eventually indeed find xmrv at similar rates as the WPI. The most somber of virologists are hinting at this. The retrovirology subfield will then get grants...and we're off and running. Knowledge will start pouring in and my toddler's life will be saved (that is, he will be able to lead a normal life: he will be able to be treated at the first sign of trouble and his potential mates will be able to get vaccinated).

    The CDC's CFS office will be irrelevant. I don't need Reeves to be punished and I don't need affirmation or any of that.

    My contention is strictly about the CAA. If they're so anxious about our feelings, why aren't they laying the groundwork to counter the imminent and inevitable federal undercutting of everything we've told our family and friends about xmrv?
  4. anne

    anne Guest

    What is the Romberg sign?

    Can someone point me to a good summary of exactly what is wrong with the CDC cohort?
  5. anne

    anne Guest

    No, I'm sorry, I mean--*I* know what's wrong with the Reeves' sample, but say I wanted to write something up about it or send an email about it with very clear facts, where would I go?

    And, that's really interesting on the Romberg. I know I've done that when my OI is bad.
  6. Dolphin

    Dolphin Senior Member

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    Good reply, Wildaisy. Other clinicians in the UK have also said this about the Romberg sign.

    You should probably have made clearer you were replying to two separate questions. The point about the Romberg sign isn't really specific to the empiric/Reeves definition. The CDC were using it for studies before this and it is not specifically mention in the Reeves definition. The CDC are presumably using it as they feel they have to exclude neurological illness.
  7. Dolphin

    Dolphin Senior Member

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    There hasn't been much written about the issue whatsoever. That's partly what prompted me to set up the petition http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html - it was an issue that was being ignored and not really talked about.

    So not sure there is much out there but if you find anything feel free to link.
    Added: Actually perhaps some of the comments that people made with their signatures on the petition topic might be useful

    The petition has some links but there are generally to reasonably technical information.
  8. Mark

    Mark Acting CEO

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    Gosh! That takes me back a few years! I used to find that happening to me at work, back in the days when I was having to go to work full-time! I've been feeling a little nervous lately that maybe I don't actually have CFS (albeit I could easily have been diagnosed with it in the UK!), because my neurological symptoms have never been as severe as most people on here, and I'm stretching a bit to fit the required number of additional symptoms (although I think I've had nearly every one to at least a mild extent at some point). Actually Gulf War Syndrome is the one that seems to fit me to a tee, particularly because the order I've seen the symptoms listed matches the progression of my condition. But this Romberg business gives me a bit more confidence that I had many of those symptoms, my brain was definitely so fogged I wouldn't remember them all.

    Gosh again! Just looked up 'tabes dorsalis' and read the best...no, the only medical description I've ever read of what I call "the itching" (the only major symptom I still can't shift; you're not allowed to itch and not get an accompanying rash, apparently, how naughty of me!). That page also explains why they all kept testing my "knee jerk" reflex! But I doubt whether anything will ever adequately explain why every physician I've mentioned "the itching" to assures me that what I'm describing is "impossible", when I've just now found out its name!!!

    Sorry for dragging the thread off topic again...carry on...:)
  9. anne

    anne Guest

    Here's a very good post that sums a lot of this up nicely. I can't remember if Khaly posts here or not. But I appreciate the time she took with this, and it echoes my feelings well.

    She also, in the post below, uses the term "Quacklash," to describe the Teitlebaum/Hyde/Marshall why-this-retrovirus-is-poppycock-and-if-you-just-follow-MY-protocol reactions, which is awesome.
  10. Advocate

    Advocate Senior Member

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    Hi Anne,

    I couldn't find the "post below" that you refer to. Was it on her blog? I did go to Khaly's blog on the CAA, and thought it was terrific.
  11. anne

    anne Guest

    Oh, sorry, go to the main page of the blog.
  12. garcia

    garcia Aristocrat Extraordinaire

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    Wow - that was a fantastic blog post. It concretizes everything I've been thinking and feeling subconsciously about the CAA.

    The term "astroturf" comes to mind.
  13. starryeyes

    starryeyes Senior Member

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    anne-- thank you very much for posting that. Khaly's an excellent writer. I'm glad she started her own blog.

    People who want to see more of her entries, Click the Home button in the upper left corner.

    Regarding "Whassup" -- well it's all there isn't it? It's hard to deny the facts when they're all in one place to see. I'm really not surprised by their reaction. I think the XMRV finding is going to expose those who pretend to be on our side and also show us who really is.
  14. George

    George Guest

    Wow. She's a great writter. I'm still miffed that the CAA hasn't done anything to track the CFS/ME/CFIDS numbers. The Autisum Association tracks numbers, the Breast cancer people track there numbers, and so on and so forth. But the CAA doesn't track our numbers.

    Thanks again for that great find!
  15. Dolphin

    Dolphin Senior Member

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    Can you give any more details - not sure exactly what you are saying i.e. what do you mean by "tracks numbers" exactly.
  16. _Kim_

    _Kim_ Guest

    Khaly asking for input

    There's a discussion going on at the WPI facebook page right now.

    Khaly wrote:
    You can add your 2cents.
  17. Marylib

    Marylib Senior Member

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    for Anne

    Your FB post is brilliant. Have been thinking of that whole "tarp" business and your post pulled it all into place for me.
  18. anne

    anne Guest

    Why, thank you!
  19. Khalyal

    Khalyal Guest

    Oh, wow, I'm really happy to see that you have been reading my blogs! Thank you so much to everyone, and especially thanks to those of you who have commented and made some very interesting discussions happen!

    Please, if any of you have anything you want brought up re the CAA, I've posted the poll at the WPI Facebook page, and also on the blogsite www.cfsuntied.com/blog1. It may be a great opportunity to try to get some advocacy changes.

    And Anne, I agree. GREAT commentary on the silly tarp!
    Khaly
  20. _Kim_

    _Kim_ Guest

    Khaly, thanks for popping over to encourage input regarding the CAA. This thread has some good comments that you might want to consider.

    You're a wonderful writer and have the ability to synthesize a lot of scattered thoughts and events into a very logical, readable piece. I'll be keeping up with your blog from now on.

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