The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

CFSAC Webinar: March 11, 2014 from 12:00-5:00 PM Eastern Time

Discussion in 'Upcoming ME/CFS Events' started by Ember, Jan 28, 2014.

  1. shannah

    shannah Senior Member

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    Agree - sound quality is very poor. It's almost impossible for me to follow. The sound actually hurts as I'm recovering from a severe migraine so hypersensitive and very fragile. May have to wait for others to report to hear what's happening.
     
  2. Nielk

    Nielk

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    Are you listening from the computer or the phone?
     
  3. GalaxiiGrl

    GalaxiiGrl

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    I'm listening on my computer. It basically sounds like a poor-quality speakerphone.

    Wow, this HRSA update on integrative medicine is just wasting time. Not saying anything specific about ME/CFS.
     
    Nielk likes this.
  4. shannah

    shannah Senior Member

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    I'm listening through the computer.
     
    Nielk likes this.
  5. Nielk

    Nielk

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    I find it so hard to follow this. I need a visual!
     
  6. Nielk

    Nielk

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    If anyone I was listening to my comment, they probably heard how I was totally out of breath. Anyway here is my comment:

    My name is Gabby Klein and like the character Alice, in Lewis Carroll’s, Alice’s Adventures in Wonderland, I cry out “curiouser and curiouser” when witnessing HHS’ words and actions toward ME patients and stakeholders.



    I cry curiouser and curiouser when:


    HHS repeatedly asserts that the IoM contract is based on CFSAC’s very carefully worded recommendation of 2012 to convene a workshop of ME/CFS stakeholders to work on diagnostic and research criteria starting with the CCC, when in fact; they have totally re-drafted the recommendation, leaving only two words “diagnostic and criteria” while changing everything else.


    I cry curiouser and curiouser when:


    Dr. Koh, in his reply to advocates regarding the allegations of intimidation by three voting members of CFSAC against the DFO, Nancy Lee, stated that he found no impropriety by Nancy Lee when in fact; no formal investigation as requested by advocates has been done. I and I am sure all ME/CFS stakeholders would like to know exactly what actions, if any, by these three CFSAC members merited threats of expulsion from the advisory committee? How confident can we be that in the future, CFSAC members can comfortably express their views?


    I cry curiouser and curiouser when:


    Dr. Unger insisted that she can’t include the 2 day CPET testing in her current multi-site study because of its prohibitive cost, when in fact; HHS has millions of dollars to fund three overlapping, flawed works into re-defining the disease. In addition, this blatant omission of the most important scientific data showing PEM in ME/CFS will result in bias data to be shared with the IoM panel.


    I cry curiouser and curiouser when:


    Dr. Unger stated that post exertional malaise is experienced by several other illnesses - when in fact; there is no proof that any other illness shows the hallmark feature of worsening of all physical symptoms upon activity and more importantly the remarked decline on second day testing. Further troubling is the fact that the CDC defiantly and dangerously refuses to remove the promotion of graded exercise from their website in the face of documented evidence of its harmful effect on patients.



    I am afraid that we are in the midst of falling through the rabbit’s hole and if these activities are to continue un-impeded we will never be able to climb out!
     
    Purple, Roy S, Iquitos and 5 others like this.
  7. NK17

    NK17 Senior Member

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    GO Gabby, GO!
    I'm in the rabbit hole with you and many others and I can't believe what I see and hear ...
     
    Nielk likes this.
  8. Nielk

    Nielk

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    Thank you @NK17
     
  9. Sasha

    Sasha Fine, thank you

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    Well done, @Neilk!
     
    Nielk likes this.
  10. Nielk

    Nielk

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    Ty @Sasha
     
    Sasha likes this.
  11. readyforlife

    readyforlife Senior Member

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    Is the meeting over? I forgot it was going on today.
     
  12. Ember

    Ember Senior Member

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    Silver Platter of Frustration
    March 12th, 2014 Jennie Spotila
    More...
     
  13. Firestormm

    Firestormm

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    Cornwall England
    Sasha likes this.
  14. Nielk

    Nielk

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