Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Action alert: Tell media/congress "What would you do if you were well?" for Mar 25 briefing

Discussion in 'Action Alerts and Advocacy' started by Sasha, Mar 16, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Cort gives more detail about Solve ME/CFS's 25 March event and it sounds potentially very productive. You can help persuade the media and congress reps and decision-makers to act! We've been waiting for initiatives to pressure the NIH for more funding using the IOM report as a weapon and this is the first big one.

    If you want some inspiration, Ryan Prior has been running a series of answers from patients on his FB page over the past week, here. I don't know if anyone has the time to type a few out, for those who don't have FB and can't see them - there are some great responses!

    Crack on, folks! This could be a hugely important meeting and this is a great idea for advocacy - very novel, and it humanises us.

    Can someone bump this thread when the US wakes up? I won't be on the forums for the rest of today.
     
    oceiv, Sushi, NK17 and 5 others like this.
  2. Nielk

    Nielk

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    Carol Head does not represent most of the U.S. patients. As a matter of fact, she doesn't represent any. She heads a private organization that does research.

    If this was meant to represent U.S. patients, they would have invited patients and advocates to the meeting. I and many others in the U.S. do not accept this promotion of the IOM report in the guise that this will be a fundraiser for us.
     
  3. duncan

    duncan Senior Member

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    They are parading a FORMER patient? I don't care who it is, I fear this is sending the wrong message right off the top.

    Moreover, tell delegates what sufferers would do were they well? Is this supposed to be poignant?

    It seems to me whenever someone tries to relate our misery through tales of poignancy, we come across as whining complainers.
     
    PennyIA, NK17 and Nielk like this.
  4. Mij

    Mij Senior Member

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    Yes, and particularly a "former patient" who has been very active and in the public a lot advocating for MANY causes.
     
    Valentijn likes this.
  5. eafw

    eafw Senior Member

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    I understand the sentiment behind this, and it may be useful in some circumstances for publicity or the media ... BUT governments and clinicians should not be making decisions on who to treat depending on whether the patient is considered "deserving" enough (or any other sort of emotional pressure).

    Yes, there is a huge waste of life and talent, and un-neccesarily so, as a result of this ilness, but just be wary of the trap that says they should help us because we're all model citizens who want to solve world hunger or some such thing.
     
  6. Valentijn

    Valentijn Senior Member

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    If she is indeed not a current patient, she is still an extremely high-profile ex-patient, who presumably understands the plight of ME/SEID patients. We've been needing a celebrity spokesman for quite a while, and I'm extremely pleased that she's stepping forward to be one.
     
    WillowJ, August59, rosie26 and 4 others like this.
  7. Sasha

    Sasha Fine, thank you

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    The IOM report rams home the notion (novel to so many) that ME/CFS is a genuine, organic disease that isn't just malingering or 'all in the head'. It's a weapon to pressure the NIH. I think we should use it. I hope that those who agree will support this piece of advocacy.

    Solve ME/CFS have managed, by using the IOM report, to get the media, congresspeople and major decision-makers interested enough in ME/CFS to come to this briefing. I hope that many of those who aren't sure about the IOM report or don't like it can see that it nevertheless presents a massive opportunity. Who wants to wait yet more years before something as major as the IOM report gets these people in through the door to be told how to help us?

    Again, let's not let the perfect be the enemy of the good.

    I certainly find the comments on Ryan's page poignant. Did you read them?

    But the media are attending this thing and they love human angles to stories. If there's no human angle they might not cover it at all.

    Like it or not, we need to appeal to people. I think this is a clever way to do it.
     
    Last edited: Mar 16, 2015
    WillowJ, Debbie23, August59 and 5 others like this.
  8. duncan

    duncan Senior Member

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    I'd be careful about making any presumptions or assumptions concerning any so-called ex-patient. High-profiled individuals are not necessarily the same as highly representative.

    More over, I suspect the delegates will want to know how she managed to get un-fatigued.

    Any bets that a healthy diet and exercise regimen, back with sage advice from a qualified psychiatrist, played a role?
     
    justy likes this.
  9. Nielk

    Nielk

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    It is a fallacy to state that the IOM report is the first one to have stated that this is a real disease. Anyone who has read the CCC and/or ICC can clearly see that this is a real and very serious disease.

    Many who promote the IOM criteria make it seem like this is the first set of criteria that state that this is a real disease. On Dr. Oz's show, they stated this is a "new" disease that finally has a set of criteria. This is totally false! we already have and have had for many years a set criteria; the CCC that has been in use and that has shown that this is a real genuinely organic serious disease.

    Why are people trying to re-invent the wheel with an inferior wheel?
     
  10. eafw

    eafw Senior Member

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    I do understand it's a bit of a necessary evil but am just being particularly cynical today and really don't like the emotional manipulation. As long as people stay aware of that and know that when it comes to actual policy (rather than wider media/awareness campaigns) it needs to be informed by the science and good clinical practice, regardless of how "well behaved" the patient group are.
     
    aimossy and Sasha like this.
  11. Sasha

    Sasha Fine, thank you

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    I didn't state that and it's not my opinion.

    And the fact that the CCC and ICC were relatively little-read is the point here. The IOM report comes from a hugely prestigious institution and that's why it's being seen and read (even in summary) by so many more people. That's why it's coming as news to many that this is an organic disease - they simply hadn't read the science before, and the IOM report has a very simple take-home message: this is a devastating organic disease and it needs major funding. And it has the clout to reach people that the CCC and ICC publications never could.

    I don't think that Dr Oz's opinion on anything (anything at all) is how we should judge medical knowledge.
     
    Last edited: Mar 16, 2015
    WillowJ, Kyla, August59 and 6 others like this.
  12. taniaaust1

    taniaaust1 Senior Member

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    I don't think we can or should be judging this high profile person till we know more about her case and what she did to get well. We shouldn't risk putting off anyone advocating for us due putting things out about them which may not be at all true.
     
    oceiv, rosie26, aimossy and 3 others like this.
  13. Cheshire

    Cheshire Senior Member

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    Of course it's not the first report to state that, but it's the first "official one".
    Establishing a connection between "those who promote the IOM" and Dr Oz is quite far fetched.
     
    aimossy, Blue, Roseblossom and 2 others like this.
  14. Valentijn

    Valentijn Senior Member

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    Agreed. I don't recall her ever proclaiming a miraculous recovery due to juicing, Yoga, and/or tantric sex, so I'm quite happy to give her the benefit of the doubt :D
     
  15. Nielk

    Nielk

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    By official you mean what? That it has been rolled out to a big media blitz? Are you stating that other disease criteria that were not created by the IOM (since the IOM has never before created criteria for disease) are not official since they did not have this media blitz?

    Many of our experts have been using the CCC for years for diagnostic purposes as well as research purposes.
     
  16. Nielk

    Nielk

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    Of course we don't judge medical knowledge on what Dr. oz says.
    If the concern is what people out there think, I hate to tell you that the public who watch Dr. Oz (and he has a huge following believe every word he says.
     
  17. duncan

    duncan Senior Member

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    Well, I applaud each and every person who can give the benefit of the doubt, case unseen, to any person who claims to be a FORMER sufferer of ME/CFS, when that person will be representing the patient community in front of a potentially skeptical audience comprised of media and congressmen.

    BTW, I am assuming when they say former patient, they are speaking about her being a former patient of ME/CFS. I bring this up only because as some of you may be aware, the IOM recommended to the IDSA they add to their Lyme panel, a patient - which the IDSA did - just, according to reports, not a Lyme patient. They added, literally, a patient. A patient of...something. Not quite sure what. But not Lyme.

    Wouldn't want a similar thing to happen with this ME/CFS meeting.
     
  18. Cheshire

    Cheshire Senior Member

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    Don't you think this is a bit of a caricature of what I said?
     
    Roseblossom and Valentijn like this.
  19. Sasha

    Sasha Fine, thank you

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    We are talking in the context of the upcoming meeting with media, congress reps and decision-makers, not the audience of Dr Oz.
     
    Roseblossom likes this.
  20. Nielk

    Nielk

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    The IOM has no power to make anything "official". All they do is produce reports as recommendations.

    HHS has not officially adopted anything. As a matter of fact, we have heard nothing yet from HHS.

    Yet, there is all this media blitz and SMCI is arranging this event with congressional representatives.

    This is very odd.
     

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