Who's watching the CFSAC meeting right now?

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, May 27, 2009.

  1. Forebearance

    Forebearance Member

    I am glad I am watching this at home, so they can't hear me scream!!

    I can't believe that dorky lady in charge, making jokes about talking with their mouths full when they are discussing things that affect our very lives.

    I can't believe that only 350 e-mails were sent in to the stakeholders' meeting, and that some of them were multiple e-mails by the same person. I thought more e-mails would be sent in.

    I'm glad that the content of the e-mails was summarized in the presentation by... was that Bill Reeves???? But he completely left out the many requests to have Bill Reeves replaced as the head of the CDC's CFS program! ARGH!!!!

  2. jasminetee

    jasminetee Member

    I don't think that was Bill Reeves talking about the emails. Oh they're back from the break. I'll write more later.

  3. 3gs

    3gs New Member

    Im trying to watch but it keeps stopping and starting. was surprised I got at all(said my internet was to slow).

    I never saw this on other sites for fms. how well was it advertised? can we still e-mail?

    heard the lady about full mouths-didnt like comment about the other drugs out there for cfs so why change
  4. Forebearance

    Forebearance Member

    I am not getting Pat Fero's point at all!
    Why is she just doing dull mumbling?
    Does she have a point???
    I feel like I'm missing something.

    I know she's a good person, but geez, aren't there any better public speakers?

  5. Forebearance

    Forebearance Member

    Tee, it sure looked like Dr. Reeves to me.
    I know the agenda said it was supposed to be Mike Miller.

    And the way he spoke made me think it was him. It was like he was totally disconnected from how important this stuff is to the people who have the illness.

    And Yay to the second speaker! She's being a lot more clear.

    [This Message was Edited on 05/27/2009]
  6. Forebearance

    Forebearance Member

    Go Mary Schweitzer!!!
  7. Forebearance

    Forebearance Member

    Wow, this really makes me want to go testify at one of these meetings.
    Can't people be more clear, strong, and direct in the way they speak?
    Patients with CFS are not looking so great as a group.

    I want to go down there and say clearly "Stop spending my tax money on CBT and GET or I will come to your offices and strangle you!" lol
  8. jasminetee

    jasminetee Member

    I hope you can. I wish I could.

    Mary was great though. Poor gal. She's suffering so much and then they cut her off.
    [This Message was Edited on 05/27/2009]
  9. Forebearance

    Forebearance Member

    Who was the guy after Megan? He was GOOD.
    Was it Cort?
  10. Forebearance

    Forebearance Member

    GO ROBERT!!!!

    I'm SO glad someone brought up the issue that no one from the CDC attended the IACFS conference![This Message was Edited on 05/27/2009]
  11. gapsych

    gapsych New Member

    Count me in!!! gap
  12. jasminetee

    jasminetee Member

    That was Cort Johnson, he did a great job and Robert was amazing in tear-jerker way. I'm so glad Kim McCleary deviated from her written speech that she had given them. She impressed me, I'm glad to say. :)

    I'm glad Mary Schweitzer said that we should burn Goal #1!

    Did you hear them say that CFS gets 3 million while FMS gets 13 million?
    [This Message was Edited on 05/27/2009]
  13. Forebearance

    Forebearance Member

    What do you all think by now?
    Meetings like this can be so mind-numbing, and yet they are deciding things that are so important.
    I thought Kim did a great job.
    Is Dr. Reeves still there?
    I wonder if I would have the guts to politely ask him to step down to his face.

  14. gapsych

    gapsych New Member

    I was also impressed with Kim. Is it Robert who told the story about his sisters and brother? Was Cort on before him? I think I missed that part.

    These people have to be expending a lot of energy to testify. I congratulate them!!

  15. jasminetee

    jasminetee Member

    I thought Robert pretty much did that (told Reeves we want him gone). lol

    Stand down Reeves, stand down!

    I don't know if he's still there or not, they all look alike to me. lol
    [This Message was Edited on 05/27/2009]
  16. Forebearance

    Forebearance Member

    Yes, Tee, I heard that about the funding.

    I wonder if anybody has accounted for the latest batch of funds that Dr. Reeves diverted from CFS research and wasted. If we could get those back it might help increase funding.

  17. Forebearance

    Forebearance Member

    Yes, gap, that was Robert and Cort before him.

    At least we can re-watch the testimony at our leisure.

    I was pretty disgusted with Dr. Reeve's presentation. I wonder what the committee members will ask him after the break. Do you suppose they'll use any of Kim's suggestions?
  18. jasminetee

    jasminetee Member

    I wish Forbearance.

    Yes, Gap, that was Robert whose siblings have all passed away from cancer and Cort Johnson followed him.

    They have these meetings every year and mostly the same people speak and I think the same people are on the committee. This reminds me of when I was teaching. The district would have us teachers on committees to say that we were a part of the decision making process and then they would just do what they wanted to anyway which was generally diametrically opposed to what the teachers thought should be done.

    [This Message was Edited on 05/27/2009]
  19. mezombie

    mezombie Member

    Robert Miller followed Cort Johnson. Miller was the one who spoke of his sibling, who received cutting-edge care for cancer. He did a great job.

    Cort is a pro having attended many of these meetings and related conferences, as is Kim McCleary.

    Let's not be too hard on the people who testified. They're here because they're sick or have a family member who is sick. They don't necessarily have public speaking experience. Plus, having attended several times, I can tell you it's hard not to get off-track and/or emotional when there.

    My symptoms are flaring just from watching and listening and will have to take a break.

    Sorry if this sounds curt but I am living up to my username right now!

    -me zombie
  20. jasminetee

    jasminetee Member

    I'm glad they're meeting during lunch. That's cool.

    I understand mezombie, watching this is making my sx flare too. I think because it is so emotional to me and it's making my adrenaline flow more etc....

    OMG, does anybody want to strangle this guy right now? Who is this? Is this Reeves? The CBT guy.

    He keeps saying that stress is a major factor. Grrrrrrrr....

    [This Message was Edited on 05/27/2009]