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Brace yourself for this tweet from HHS Office of Women's Health(OWH)

Discussion in 'Action Alerts and Advocacy' started by Denise, Feb 26, 2015.

  1. Denise

    Denise Senior Member

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    August59, luludji, oceiv and 6 others like this.
  2. SB_1108

    SB_1108 Senior Member

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    I feel like someone should clarify the difference between "chronic fatigue syndrome" and "chronic fatigue" in the comments. I would be I don't have a Twitter acct.
     
  3. halcyon

    halcyon Senior Member

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    Looks like @JenB already did.
     
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  4. Kati

    Kati Patient in training

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    :ill: We need to get out of the OWC.
     
  5. ahimsa

    ahimsa Senior Member

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    I almost never tweet (barely know how, LOL!) but I thought I'd try. I tried to be clear without being too confrontational.

    Here's my tweet (I'm ahimsa_pdx on twitter, by the way):
     
    Last edited: Feb 26, 2015
    SpecialK82, Valentijn, oceiv and 6 others like this.
  6. halcyon

    halcyon Senior Member

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    Agreed. I'm not sure the ODP would be any better, but it's a start.

    Would it be too much to ask for our own office and division like AIDS has?
     
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  7. ahimsa

    ahimsa Senior Member

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    For those without twitter accounts (and/or too much brain fog to find tweets at twitter.com) I thought I would post a few more good responses to the tweet by womenshealth:

    * From jenbrea (Jennifer Brea), mentioned above by @halcyon:
    * From pandoraorg (PANDORA organization)
    * From knittahknits (Jennie Spotila)
    I realized too late that I should have made my own tweet a reply so that folks could see which specific tweet I was referring to. Oh, well!
     
    Last edited: Feb 26, 2015
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Any response to these tweets from HHS Women's Health?
    Thank you again to all who catch this stuff and respond.
     
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  9. Denise

    Denise Senior Member

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    I emailed the Office of Women's Health a few hours ago but have not had a response.
    If others are inclined to send an email the address for OWH is
    WomensHealth@hhs.gov
     
    ahimsa, beaker, oceiv and 1 other person like this.
  10. catly

    catly Senior Member

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    outside of NYC
    I'm pretty sure OWH has been tweeting the same tweet for some months now. I replied to them multiple times in the past but guess they haven't gotten the message--including the findings and recommendations from the IOM.
     
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  11. Denise

    Denise Senior Member

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    I am sorry that no one at OWH has paid attention to your comments @catly. That's not a good thing.
    I was unaware of the tweet until today...
    Because HHS likely has not determined what the next steps regarding the findings and recommendations from the IOM, they would be unable to use info from the IOM report because that would appear to be an endorsement of the report.
     
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  12. catly

    catly Senior Member

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    Haven't been on twitter lately but I was able to go back and check my previous tweets and found that I did reply to the same tweet from OWH on 12/15/14, with the same link to the usa.gov website. So, yeah, they must be recycling their tweets despite previous responses and updated news--like the IOM report that was commissioned by umm--them HHS. Typical for the government.
     
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  13. alex3619

    alex3619 Senior Member

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    This disease should never have been in the OWH. I do understand that such is the level of misinformation and lack of education on this subject that many will confuse CF with CFS, CFS with ME, etc.

    We need to correct these failings whenever we see them.
     
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  14. *GG*

    *GG* Senior Member

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    It's the government, doubt it's going to do any good! It's not gov't, of the people, by the people etc...

    GG
     
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  15. oceiv

    oceiv Senior Member

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    Thank you to those who corrected the misinformation in the tweet.

    If they are recycling tweets, it's possible that they are using a program to automate their tweets. This might mean that there is no actual person is tweeting live and therefore there is no one to see and respond to tweets. Or alternately, it could be a hired contractor or social media person who cranks out tweets on a schedule but is not tasked with responding.

    But it's still important to correct misinformation for the other people who read the OWH tweets.
     
    Last edited: Feb 27, 2015
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  16. ahimsa

    ahimsa Senior Member

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    Yes, I think that's right. Maybe the OWH is not going to do anything about it or will be very slow to respond. But at least we can do our small part to correct the misinformation.

    Many thanks to @Denise and all the other folks who monitor these tweets and other forms of communication.
     
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  17. ahimsa

    ahimsa Senior Member

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    I saw on another forum thread that womenshealth has apologized for the incorrect tweet:
    So our tweets did make a difference!

    I thought I'd pass along this good news for those who don't follow twitter regularly.
     
  18. Denise

    Denise Senior Member

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  19. Hip

    Hip Senior Member

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    I often use the phrase "chronic fatigue" when talking to people about my ME/CFS. It's just a convenient abbreviation. Of course I know that CF is not the same as CFS, but since you hardly hear about actual CF, it's unlikely to lead to confusion.

    Comments such as:
    are in my view over the top and annally retentive. Frankly, it's irrelevant.
     
    Marco likes this.
  20. Valentijn

    Valentijn Senior Member

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    I don't. Never.
     
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