Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

CFSAC Meeting Scheduled for January 13, 2015

Discussion in 'Action Alerts and Advocacy' started by Wally, Dec 18, 2014.

  1. Nielk

    Nielk

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    I wonder why they couldn't provide it to us BEFORE the meeting. This is supposed to be a public meeting - federal law.
    If we can't follow what's going on, how public is it?
     
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  2. Nielk

    Nielk

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    Not sure if this can pass for a legal public meeting.
     
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  3. Nielk

    Nielk

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  4. Nielk

    Nielk

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    They are legally supposed to accommodate the disabled. It is impossible for us patients to follow what is going on. They each have a hard copy of what they are discussing. We have nothing. I don't think that they can legally sign off on this...as a legal public meeting.
     
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  5. GalaxiiGrl

    GalaxiiGrl

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    The committee just spent time wordsmithing their recommendation for how to word the section on excercise therapy. It would have been better if they had said that exercise is not an appropriate therapy in any way. It won't improve the symptoms of a person with ME, so why recommend it at all?

    EDIT: I'll answer my own rhetorical question: POLITICS. :mad:
     
    Last edited: Jan 13, 2015
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  6. Nielk

    Nielk

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    I just sent the following e-mail to Barbara James (DFO)

     
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  7. Nielk

    Nielk

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    They are discussing whether to ask for adoption of the CCC.
     
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  8. Nielk

    Nielk

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    They simply could have posted the document in question on CFSAC's website for us to follow. We were not considered.
     
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  9. GalaxiiGrl

    GalaxiiGrl

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    One committee member, Elisa ?, is concerned that the recommendations that health care providers need to be educated in active listening skills would offend doctors. Yes, my number one concern here is hurting their delicate doctor feelings.
     
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  10. Nielk

    Nielk

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    Barbara: There's no way to retract the historical PACE trial even though it used Oxford.
     
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  11. Denise

    Denise Senior Member

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    Astounded that they have been allowed to go over the allotted time!
    Also astounded that they have approved the document. I did not think it would happen.
     
  12. Nielk

    Nielk

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    They voted in stating don 't use PACE studies to inform clinical recommendations and retire Oxford definition.
     
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  13. Nielk

    Nielk

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    Final document will be posted on CFSAC and posted to the CFSAC listserv.
     
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  14. jimells

    jimells Senior Member

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    @Nielk as always, thank you for posting notes on the meeting.
     
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  15. Nielk

    Nielk

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    I wish I could have done a half decent job but, it was impossible for me to follow in any meaningful way.
     
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  16. Sing

    Sing Senior Member

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    I took a lot of notes but won't post them all as I don't have the energy or quite enough memory (ha, ha). But I will say I was very encouraged by the changes they agreed on today and what they will be sending to the P2P. To my mind they were not pulling any punches. Their document will certainly be respectful but it began by recommending that ME be distinguised from CFS and that the CCC be universally adopted until such time as updated criteria are accepted. They want Oxford to be retired and Oxford based studies not to be used to inform treatment recommendations. They want the ME/CFS community (they went back to using the designation ME/CFS as it was the nomenclature in the draft report, even though they had recommended separating these two entities) to be able to review the recommendations of IOM before any new clinical definition is decided upon, and after this, the research definition too.

    Donna Nelson did a great job, I thought, in managing this conference. She did at some points, however, seem doubtful and leaning towards withdrawing language and ideas which she believed the P2P would not use, but the group strongly over-rode these doubts by saying that they want to be on record with what they understand about this illness and what they really do recommend--even if P2P does ignore them.

    Barbara James got permission to extend the time so that important final business could be completed.

    I heard a lot of participation and influence from Maryann Fletcher, Jose Montoya, Susan Levine and Gary Kaplan.

    My one question to anyone here is, where was Dr. Unger? She was listed at the outset as a member of the Non-working group, which also included Jose Montoya who spoke a lot, but I never heard her so assume she was one of the people absent, at least from this part of the process of hashing out changes.
     
    Last edited: Jan 13, 2015
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  17. waiting

    waiting Senior Member

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    I tried to listen but was completely unable to focus -- it was "word soup" to me, unfortunately.

    However, what I did notice was how hard they are working on our behalf. I was very impressed by their excellent, engaged work -- it would be very trying, even for a healthy person, to accomplish what they did today in 2 hours.

    It was great to hear Dr. Montoya and Dr. Fletcher, especially, and others. So grateful for their voices.

    Edit: and also thankful for the patients/advocates who continue to speak out.
     
    Last edited: Jan 13, 2015
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  18. Nielk

    Nielk

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    They had worked on all this in a working group. They each were e-mailed the document in advance so that by the time the meeting started they were all familiar to what was going on. They basically just had to go through it in a public meeting so that they can legally vote in it in a public way.
     
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  19. Ember

    Ember Senior Member

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    According to my notes and recollection...

    Donna reported that, with the IOM working on a clinical case definition, language that could be construed as a dig at CDC/NIH was not included. But Dr. Kaplan resisted the censorship.

    Barbara James tried to cut off, for lack of time, Dr. Kaplan's final motion recommending that the CCC be adopted until updated criteria are accepted. Discussion was curtailed, and subsequent items recommending that an ME/CFS committee review the IOM Report and agree on a single case definition to be modified for research purposes and widely disseminated remained. No language specified that this ME/CFS committee of stakeholders would be comprised of experts.

    The Committee quickly passed its motion of acceptance and then continued to deliberate on different topic for another 15 minutes.
     
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  20. Ember

    Ember Senior Member

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    Dr. Unger was present, but she isn't a voting CFSAC member.
     
    Sing likes this.

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