Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A very odd thing just happened to me

Discussion in 'General ME/CFS Discussion' started by Sandman00747, Mar 9, 2017.

  1. Sandman00747

    Sandman00747 Senior Member

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    United States, Kansas
    I just got a call that I did not answer because I didn't recognize the number. They left a voicemail. It was the flippin' CDC wanting me to answer a brief survey about the state of my health. I have NEVER written or called the CDC ever. How did they get my number? What in the world is going on here? I'm sure not going to call them back. Are they finally worried since they know ME/CFS is still spreading rapidly around the world? I don't know but now I will have to cut Trump some slack regarding being paranoid!
     
    Last edited: Mar 9, 2017
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  2. Chrisb

    Chrisb Senior Member

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    It must be that Samsung TV you have.....
     
  3. Sandman00747

    Sandman00747 Senior Member

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    Yes, I do have a Samsung. Damn, you're making me paranoid @Chrisb! But I now live such a simple " no life" kind of life that I can't imagine anyone would be interested in my daily misery!
     
    Last edited: Mar 9, 2017
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  4. Esther12

    Esther12 Senior Member

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    They sometimes do surveys of a random population. Could just be that?
     
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  5. Sandman00747

    Sandman00747 Senior Member

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    I am hoping that is all it is @Esther12 but it still makes one wonder. It was the last call I ever expected to get!
     
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  6. *GG*

    *GG* Senior Member

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    I would make sure it is not a phishing scam of some sort.

    Big brother is always listening, its' great having all that money to waste!

    GG
     
    Last edited by a moderator: Mar 9, 2017
  7. Dechi

    Dechi Senior Member

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    Call back and ask how they got your number. At least you'll know.
     
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  8. Skippa

    Skippa Anti-BS

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    CDC?

    Center for Disease Control?
     
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  9. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Make sure you google the number. Usually that will determine whether it is a phishing scam.
     
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  10. Sandman00747

    Sandman00747 Senior Member

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    Yes they said they were in the voice mail @Skippa
     
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  11. barbc56

    barbc56 Senior Member

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    Could it be a sick joke or your name on some sort of petition or anything public about any health problems. I'm not really sure what can be seen or hacked on your phone or if there's even a difference.

    Do you still have the voicemail or energy to transcribe what it said?

    I did get several calls last year where I won a cruise or vacation but they weren't voicemails. With one, I kept repeating "Put me on your do not call list!" until I realized it was a recording! It was really quite eerie. There must be some kind of program which replicates the pauses, inflections and whatever else is needed to replicate someone talking to you to keep you on the phone. It even paused at one point as to give me a chance to make a reply. I don't remember why I answered as I usually don't for numbers I don't recognize.

    I think I'm going to spend the rest of the day under my bed instead of in it. Just in case.
     
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  12. rebar

    rebar Senior Member

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    I can not imagine the CDC makes random calls, out of the blue for participation in a survey. Does not make sense. The call was a set up for some type of solicitation.
     
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  13. Sandman00747

    Sandman00747 Senior Member

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    I can't imagine that either @rebar but I believe they did do this many years ago because I had a friend in Wichita, Ks. that was called for a survey and it was real because they then received forms in the mail to fill out concerning ME/CFS and he said he had the official logo, etc. I think you can google this survey the CDC did many years ago. I just

    don't know what to think anymore, but like @barbc56 I'm going under my bed for awhile too! Sorry to say but I have no trust of our government any more, absolutely none. And this is in no way any kind of a political statement!
     
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  14. Joh

    Joh Inactivist

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    Hi @Sandman00747, do you still have the number saved as missed call in your phone? You could google it and check if it's an official CDC number. I often check numbers I don't know this way (to make sure it's worth calling back and not spam).

    If it really is some kind of CDC survey, it could be a chance to educate about the reality of ME. I had a call from my insurance, and they asked how long I plan to be "too tired" to work and said there's no way I can retire in my 30ies because i "feel tired". After I explained what ME is really like and my restrictions in daily life (bedbound etc.) and how much I hate missing out on my life, she was very surprised, apologized and admitted to know nothing about ME and that she had only interpreted the name "chronic tiredness syndrome" (the horrible German translation).

    My case is still being reviewed, but I feel that the calls (some more followed) worked better than the written correspondence to explain to what degree this illness destroys my life and that I'm definitely not enjoying life while I collect government cheques but want nothing more than to get better and get back to work. So maybe the survey could be a good opportunity for a little bit of advocacy. :)
     
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  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Just because they said they were with the CDC doesn't mean they really are. [Not to make you any more paranoid or anything. ;)]
     
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  16. barbc56

    barbc56 Senior Member

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    And.......

    Just because you're paranoid doesn't mean others aren't after you! :D
     
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  17. Forbin

    Forbin Senior Member

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    I noticed that you're located in Kansas. I don't know if you live in Wichita, but the CDC has conducted a couple of surveys in Wichita concerning CFS.

    This is from a 2006 press briefing with the late Dr. William Reeves.
    This CDC Study Overview goes into some detail concerning the Wichita data and how it was collected. It lists 21 different studies that have utilized the data (a partial list).
    My guess is you were called at random. It's also possible that whatever survey they are doing now has nothing to do with ME/CFS. The CDC may use Wichita as a data source for more than one condition.
     
    Last edited: Mar 13, 2017
  18. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    The CDC does random telephone surveys. They also recruit patients who have seen doctors that they are working with. I wouldn't go giving away private healthcare information without verifying that they are really with the CDC first, but once you've done that, go for it, enlighten them.
     
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