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A review of HHS actions - as I see it

Discussion in 'General ME/CFS Discussion' started by Nielk, Sep 29, 2013.

  1. beaker

    beaker CFS/ME 1986

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    There is always. ALWAYS something going on that seems to be overwhelming and distracting to our reps. from our advocacy.
    There always will be something. We have to put blinders on in a sort of a way and focus on our corner of the world.
    I've learned all these years that no one is going to do it for us. As hard as it is, we have to be the heros in this advocacy fight. It isn't easy. I would rather roll over in bed and sleep than type this. when I am done with this I will : )
    But whatever little we can add, we should and we must.
    We are it.
    Roy S and Nielk like this.
  2. Nielk

    Nielk

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    Thank you. I needed this encouragement!
    readyforlife and beaker like this.
  3. Ecoclimber

    Ecoclimber Senior Member

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    beaker and Nielk like this.
  4. Andrew

    Andrew Senior Member

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    Just a thought, the IOM committee will be made up of volunteers from various medical specialties. Well, the signers of the CCC and ICC come from various medical specialties, and the experts that protested the this project come from various medical specialties, so why not just nominate them. They are specialists in various fields of medicine and research PLUS then have experience with ME/CFS.
    beaker, Firestormm and Valentijn like this.
  5. Firestormm

    Firestormm Guest

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    Indeed she was, before she and they knew the contract had been signed and what it's details were. Her stance now though is not necessarily one that will be adopted by all signatories - we just don't know at this point: and may never know what they all think in this respect. Once again we have to wait and see. Getting used to being a mushroom (left alone in the dark) is never easy is it? :(
  6. Ember

    Ember Senior Member

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    Despite all the evidence, it's tempting to believe that the game isn't fixed:

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  7. Nielk

    Nielk

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    What are the odds that this will transfer into reality? We can dream though.:)
  8. readyforlife

    readyforlife Senior Member

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    It seems the IOM contract has been signed and is going to go through. Maybe its time we send emails suggesting that they nominate the doctors and researchers that signed the letter.
  9. Sasha

    Sasha Fine, thank you

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    I'd like to see a unified approach from patients or we'll get nowhere - if we're not all asking for the same thing, we're not asking for anything.

    Patients have seemed happier to get behind our expert researchers and clinicians than to follow other patients' lead on advocating for guidelines, as we saw some months ago on the FDA (?) petition on name-change and diagnostic criteria. I'd like to see clinicians/researchers stating their view now, in the light of the info that came out from HHS on the same day about the nature of the contract and now that we're past Sept 30th.
    readyforlife likes this.
  10. Keela Too

    Keela Too Senior Member

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    This seems sensible.

    It is very clear that the outcome is entirely dependent on the panel that are selected.
  11. Ember

    Ember Senior Member

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    Are expert clinicians/researchers now being bombarded with emails?

    “Starting on September 30, we have been sending emails to the 35 signatories asking what next step they have planned and to offer our assistance to them. This is the wording of this email we are sending to them....”
  12. Sasha

    Sasha Fine, thank you

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    I was assuming that meant sending a single email to each of the 35 signatories - I agree the wording is ambiguous but I find it hard to imagine advocates e-bombing the signatories. :eek:
  13. Ember

    Ember Senior Member

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    Starting on September 30?
  14. Nielk

    Nielk

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    A heartfelt letter by Mary Dimmock:

    beaker and Valentijn like this.

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