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The CDC is soliciting an RFI for broadcasting promotion of CFS

Discussion in 'Action Alerts and Advocacy' started by Nielk, Jul 29, 2015.

  1. Nielk

    Nielk

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    Is this a joke? CDC is the only agency still using the name chronic fatigue syndrome. They are using the Fukuda definition for diagnostic criteria.


     
  2. Denise

    Denise Senior Member

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  3. Never Give Up

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

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    This is AMAZING! They are looking to create a 3 year CFS public education campaign! Isn't this what we want? The entity that produces the PSA's will even "provide a subject matter expert" to help!

    As far as the name goes, no matter which name they choose, they can't win! I hate the name, too, but keeping it has it's merits. Doing so will allow the benefit of building on current awareness of both medical and non medical providers. It will also avoid the medical, media, and public sneering at the renaming as a ridiculous attempt to placate the crazies, which could easily be the outcome of such a campaign. It makes logical sense to build awareness first and rename after more is known about the etiology. The renaming could then be very powerful, instead of just a joke.

    This is forward progress, not perfection. Nothing much in life is perfection. Let's take the progress. Support the progress. If I worked for the CDC, trying to help this patient population, and if I were met with angry critique of everything I did, I would rotate off of the assignment as soon as I could. My replacement would likely be someone who didn't give a crap and would accomplish far less. Our critique will not stop this, it will just irritate the human beings trying to help us at the CDC.

    This is good. It's not perfect, but it's good!
     
    leokitten, AndyPandy, SOC and 7 others like this.
  4. Nielk

    Nielk

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    Thank you @Denise - I edited the title.
     
    Denise likes this.
  5. Nielk

    Nielk

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    I don't see it that way. Perpetuating the idea that this is a "fatiguing illness" is not progress.
     
    Liz Willow likes this.
  6. A.B.

    A.B. Senior Member

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    If this is a patient centered initiative that wants to tell things as they are, it could be very good.

    It could also be a nightmare if it merely repeats the psychosocial garbage from one of the false experts.
     
    WillowJ, AndyPandy, jimells and 3 others like this.
  7. Denise

    Denise Senior Member

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    One concern is - will those doing the editing understand this disease and ensure that the final product accurately conveys our reality?
     
    SOC and Never Give Up like this.
  8. worldbackwards

    worldbackwards A unique snowflake

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    Not being a US citizen, I'm not really up with this, but I seem to recall an US ad campaign towards the end of the last decade where they claimed that there were 4 million sufferers. I'm not really sure that this will end well.
     
    Liz Willow likes this.
  9. Never Give Up

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

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    It sounds like the audio is expected to include interviews, presumably with patients.

    The IOM committee was made up of many ME/CFS experts, and considered the input of patients and care givers, so they know where to find experts.
     
  10. Bob

    Bob

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    The CDC will identify the subject matter experts:
     
  11. Mary

    Mary Senior Member

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    I guess I would rather they spent the money on research. There was a public awareness campaign about CFS several years ago - I think I saw a spot on TV, saying basically CFS is a real and serious illness. I think it was sponsored by the surgeon general. And that was the end of that. Although they do sound like they have a clue of what it can be like:

     
    Misfit Toy and Kati like this.
  12. Nielk

    Nielk

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    Do the different US health agencies communicate with each other? We are way post the IOM report and awaiting HHS' response to the IOM proposed criteria and SEID name. Yet, the CDC is seeking to propagate the Fukuda criteria and the CFS name?
     
    jimells and Liz Willow like this.
  13. Never Give Up

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

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    This is an opportunity for us to control the final product!

    Send this RFI to everyone you know of who would be good at creating the spots!
     
  14. Never Give Up

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

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    @Nielk how did you come across this RFI?
     
  15. Nielk

    Nielk

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    A friend on Facebook found it.
     
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  16. Liz Willow

    Liz Willow

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    The last time the CDC came up with a PR campaign we got glossy, airbrushed photos and PSAs showing a tired woman trying to juggle a family and career. The PSAs must have been shown at midnight as few people I know ever saw them. Google "CDC Faces of CFS" for images and check out this 2006 CDC press release.
     
    jimells, medfeb, Mary and 1 other person like this.
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's true this could be super great or a disaster.
    After the IoM process turned out better than I anticipated I'm willing to think there's a chance that this too could be good.
    Things can and do change but always much more slowly than we need or would like.

    It's possible that there is communication coming across the pipe (between gov't agencies) that is motivated by the momentum of change toward ME/cfs.

    At any rate let's hope there is opportunity as patients to have a great deal of input into getting across the severity and biologic nature of ME/cfs.
     
    Never Give Up, Bob and John Mac like this.
  18. Nielk

    Nielk

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    By the way, I don't read this as a request for patient input. Their RFI is to contractors.
     
    jimells and Bob like this.
  19. Never Give Up

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

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    Right. Certainly someone in the ME/CFS community must have a family member or friend with the skills and motivation to take this on.
     
  20. snowathlete

    snowathlete

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    This is potentially progress. Part of progress, when it comes, will be educating the medical community and the public. But of course, we want it to be accurate information as innacurate information could make matters worse. I suspect what we will get is something that on balance is of benefit but which also has some flaws, but that is just a guess and we will have to see. I hope the right people get involved in this and I hope we can influence it in some way to increase the chances of a good outcome.
     
    Never Give Up and Bob like this.

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