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Meet the CDC CFS Cohort

Discussion in 'XMRV Research and Replication Studies' started by Levi, Nov 15, 2009.

  1. Levi

    Levi Senior Member

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    ...........
  2. Christopher

    Christopher Senior Member

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    Brilliant work.
  3. anne

    anne Guest

    Your tax dollars at work.
  4. Kati

    Kati Patient in training

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    Quoting the abstract method:



    We conducted a random telephone survey in Wichita, Kansas to identify persons with chronic fatigue syndrome and other fatiguing illnesses. Respondents reporting severe fatigue of at least 1 month's duration and randomly selected non-fatigued respondents were asked to participate in a detailed telephone interview.

    End of quote


    Mr Reeves you should be ashamed of yourself for doing such a bad job- getting paid whatever salary you are recieving for RANDOMLY phoning people and asking them if they were tired.

    You obviously have never met a CFS/ME patient in person, never spent time with any of us or haven't discussed with any physician who treats them.

    You have no idea of the harm you have done to all these families not only in the US but around the world.

    You were not hired to do telemarketing or telephone survey- and you were not hired to compare the lifestyle of the fatigued VS the non fatigued.

    The time has come that you stop that high school type of survey, and leave the CDC position to someone that understands the disease, someone that is motivated to make the lives of thousands of people better.

    Goodbye and so long.
  5. hvs

    hvs Senior Member

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    Yes, genius. This must have sent a bolt of lightning across the health fields.

    I see that if a subject had had a debilitating heart attack or stroke two years and a day before they were surveyed, they were NOT excluded from the study. Also, I see no mention of excluding the morbidly obese.
  6. condra

    condra

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    I'm astonished. This is so shameful.
  7. Finch

    Finch Down With the Sickness

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    As soon as someone calls me and says "survey," I hang up. They'd have missed me!
  8. kurt

    kurt Senior Member

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    USA.Earth
    that was just a screening question

    The one month duration of fatigue was just the initial screening question for a more in depth interview.

    I am not trying to defend the CDC, they obviously do not understand CFS, but just want to point out that they are not saying one month of fatigue = CFS.

    The study used the standard CDC CFS criteria which included six months of fatigue. They were simply trying to learn whether CFS is simply extended versions of ordinary fatigue.

    And clearly the CDC can not understand the CFS research literature, or they would know as much about CFS as everyone else. Maybe they do not read anything they have not produced themselves.
  9. Koan

    Koan Be the change.

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    And, this was after the misappropriation of funds!

    The Emperor is stark naked...

    and stark staring mad.
  10. Koan

    Koan Be the change.

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    Hi Kurt,

    How many people do you suppose were chosen initially based on 1 mo. of fatigue and then, when contacted for their in depth interview and asked about 6 mo. of fatigue, thought to themselves, "Hmmmm, have I been tired for 6 mo.? Yeah, I have!"

    No matter what diagnostic criteria they used, the survey is riddled with flaws. It betrays a complete lack of thought and effort and represents a total waste of time and money.

    Thank you for letting me vent. I know you already know.

    peace out
  11. Christopher

    Christopher Senior Member

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    Koan,

    I think you need a new attitude. How many of us didn't KNOW that we had less energy than normal people before this study came out. I think they deserve a big thank-you for enlightening everyone that those with chronic fatigue syndrome have chronic fatigue as one of their main symptoms.

    :D
  12. World wide corruption

    In the UK, as we speak - the Department of Health (DOH) are doing 'research' that involves proving that people with CFS/ME will increase activity with CBT/GE (by being encouraged) and over time do more and more. This will show that altering patients beliefs because they are 'fearful of exercise' - will reduce long term disabilty in CFS/ME, and get people back to work, and off benefit payouts.

    Now one could ask, if these patients are genuine - then they will relapse and get worse, right? Right. So knowing this, in the middle of the 'research' study - the participants step counters on their feet - have been removed!!!!

    Now scientifically, this would invalidate the study - right?
    No. The study is continuing, with no record of how many steps (distance moved) the participants have increased (or not) by.

    Soon it will be revealed for the millionth time - that CBT/GE increases health in CFS, is 'cost effective', 'safe' and 'evidence based'.

    The authors of the study just won't mention the fact they removed the pedometer half-way through the study). Welcome to the National Health Service (NHS) in the UK. The CDC's Nationalised health care system in action. As long as we all get XMRV+ blood tests, soon this wont' matter - but we'll never forget they did this to us for 2 decades. Never.
  13. anne

    anne Guest

    I KNOW! And they were kind enough to tell us that we feel just as shitty as actual sick people! That is just so validating of my state of unwellness!
  14. Koan

    Koan Be the change.

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    Christopher,

    Yes, you're right, I need an attitude adjustment. Thanks for tuning me up! :D

    CTOT,

    Unbelievable, unbearable, unconscionable...
  15. Cloud

    Cloud Guest

    Several of our top researchers have expressed serious concern about this study and the obvious differences with inclusion criteria. The CDC immediately and very publicly confronted what they perceived as shortcomings with the original WPI xmrv study. And they were 100% wrong in that perception. Now this CDC replication study has obvious flaws, yet it goes unchallenged. Well not true, it has been challenged, yet the study moves forward unchanged. I have not been able to get even close to a reasonable explanation for why the CDC gets away with this. Even if the CDC/NIH didn't agree with the Canadian Consensus diagnostic criteria (which obviously they don't), they must be able to at least see that it is vastly different than what they are using for the Wichita cohort. A baboon can see it! How can anyone call themselves a scientist, violate the principals of scientific process, and expect society to go along with the lies. It's not good enough that they are using only "some" of the WPI group and their selection criteria. That does not define "replication". What am I missing here? What I don't understand....please someone help me understand....how the CDC can get away with this blatant violation of scientific process. It's so ridiculously obvious that there has to be an explanation. Anyone?

    I guess I can always look at this like the CDC will have egg on their faces regardless of their inevitable contradictory study results because everyone will see through their manipulation. This may be especially true because there are many replication studies taking place independent of the CDC. Hopefully that momentum is big enough to expose their lies and manipulation. And then we move on without them.
  16. anne

    anne Guest

    They will announce, and it will be a bump in the road, but then other people will replicate it, and it will actually expose them for who they are. They will become completely irrelevant.
  17. What a truly wonderful day that will be!!!!

    I agree if the diagnosis is soon XMRV+ then the disease is no longer 'unexplained' and one simply walks away from CFS/ME as the rubbish it is. A rubbish that stuck us in the garbage bin upside down.....

    How simple that could have been, all those years ago to just walk away from an accusation of CFS. But we could not. :(

    Someone tied us all to the bed post, in the name of a kinky Psychiatric theory. :mad:
  18. Martlet

    Martlet Senior Member

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    Last month, I had a colonoscopy with deep sedation. As the anaesthetist ran through his list of questions, I asked him if he had heard the news about CFS and XMRV. He shook his head, so I told him what was known so far. Bless him, when I said retrovirus, he gulped really, really hard, then said "I knew it had to be caused by something." But the look on his face and that gulp will stick with me. It spoke volumes about the change in attitude that might be just around the corner.
  19. Cloud

    Cloud Guest

    Thanks Anne....I agree with you and just needed a little nudge
  20. starryeyes

    starryeyes Senior Member

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    Yay Martlet! This is great. I hope hope hope....

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