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Watch CFSAC meeting online Monday 9-4 EST May 10

Discussion in 'General ME/CFS News' started by citybug, May 7, 2010.

  1. garcia

    garcia Aristocrat Extraordinaire

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    You can hear Dr Hannah's comments here

    http://www.youtube.com/watch?v=LNL7YsAc1hE#t=4m40s

    Her remarks are very incoherent, she gets emotional and defensive, offers no evidence for her position and is ultimately defeated by the committee.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm sure this has been done in the past and I wonder what his response has been. I do agree that this question must be posed to him at every meeting.

    :D

    Yes.

    This is very important imo.

    Precisely.

    Good clear wording.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    In Cort's interview with patient advocate Rebecca Artman, she said she felt Hanna was very good to us. I'm going to try to get in touch with her to see what she means as I certainly didn't get that impression about Hanna from this meeting and our funding levels.

    Dr. Hanna brought up that there had been concern when she was appointed that her lack of experience with ME would be a problem. She said here that she had said at the time that 'if I can do for 'cfs' what i did for the alcohol program at Mass General, which is #7 in the country, it will be great.' problem is i'm not seeing a willingness to do her job much less elevate the program to an elite status of excellence.

    According to her she did a great job at the alcohol addiction program at Mass General, but she was alot more suited for that job since she is a psychologist whose work experience is almost entirely in alcohol abuse, not an MD and i'm not sure if she's had any formal training in public health. Walter Gunn was a psychologist and he did good work for us at CDC in the early days, but generally speaking a psychologist specializing in alcohol addiction is an inappropriate choice to head up 'CFS' efforts at NIH.
  4. garcia

    garcia Aristocrat Extraordinaire

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    Hanna's defence of herself was extremely unprofessional, especially as no one was attacking her. It's like she made the whole issue about herself, when clearly it was about the safety of the blood supply. On that basis alone (and knowing little else about her) I question whether she is the best person to serve on that committee.

  5. shiso

    shiso Senior Member

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    It would be interesting to learn anything positive about Dr. Hanna with respect to ME/CFS.

    I don't know anything about her firsthand but Cort did this blog piece about her (and NIH's poor show in general) last October, which gave me the impression that she has NOT been our ally:

    http://blog.aboutmecfs.org/?p=1020

    I don't know the up to date facts about where Dr. Hanna fits into the ME/CFS picture at NIH currently, i.e., whether she is still responsible for ME/CFS within NIH. In any event, it would be interesting to find out what, if anything, of help she has been to us.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

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    Jennie,

    Congress also bases their decisions on input from lobbying. That's how groups such as AIDS, breast cancer, etc. are able to do so much good. It's how we got CFS research going in the first place.

    You have been on the CAA Board of Directors since 2005 and Chairman of the Board for part of that time.
    Kim has been running the CAA for 20 years and I think the NIH research funding in inflation-adjusted dollars is below what it was when Ted Van Zelst and I turned things over to her back then. It's hard to believe how bad things have become. I don't blame the CFSAC. If it wasn't for the WPI we would be in horrible shape.
  7. garcia

    garcia Aristocrat Extraordinaire

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    Amen to that Roy. That also applies to the UK situation too.
  8. jspotila

    jspotila Senior Member

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    I think we need MORE advocates. Other diseases, like MS, autism, etc, invest MILLIONS of dollars a year in government relations advocacy. CFS needs more dollars invested in the specialized advocacy needed in DC. CFS needs more people to participate in free advocacy efforts like Virtual Lobby Day.

    The only US vs. THEM that I see is people affected by CFS (US) vs. people who hold the purse strings for research money (THEM).
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    Jennie,
    Did Kim invite Annette Whittemore to accompany her lobbying on Capitol Hill after the last CFSAC meeting?
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    bumping this up for Jennie
  11. jspotila

    jspotila Senior Member

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    Thanks Roy. My understanding is that Mrs. Whittemore had her own series of appointments when she was in DC for the CFSAC meeting, but Cort had a chance to speak to her personally so he would know better than I. I'm not sure what Ms. McCleary's schedule of meetings was on that trip; they may have been related to the Campaign against Chronic Pain in Women, which launched on Capitol Hill the following week.
  12. jspotila

    jspotila Senior Member

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    I answered the question based on the information that I have.
  13. Martlet

    Martlet Senior Member

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    Moderator note: Would you please reduce your font size? This large font looks like you are shouting. Thanks.
  14. _Kim_

    _Kim_ Guest

    Yeah, see that's a problem. All this talk about forum rules and the link at the bottom of each page does not even go to them. The bottom of the page is an outdated set of rules. The 'official' rules are in a sticky in Nuts & Bolts. And the rules mention nothing about font size.

    I want to know why everyone else can use any size font they want but Wildaisy is singled out by a moderator? Are moderators making up new rules that apply only to certain members? Is this what Cort meant by allowing them to moderate in their own style. Heaven help us.
  15. Martlet

    Martlet Senior Member

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    Why were you using a larger font? This appears to be a new thing for you. FWIW, the post was reported because a member felt that you were shouting at another member and, since you don't normally write in such a large font, I asked you to reduce the size because it appears as if you were shouting. Would it not have been better and just as easy to say "No, I wasn't shouting?"
  16. spindrift

    spindrift Plays With Voodoo Dollies

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    Martlet as far as common Internet etiquette goes, using capital letters is shouting and font size has nothing to do with that.
    Also as others have correctly mentioned font size is not regulated by forum rules. For many members a larger font size
    is actually easier to read. It is offensive to forum members when moderators just make up forum rules.
    Both members and moderators need to apply forum rules to make this work.

    If someone has reported the font size to you it would be correct to let them know that font size is in no way an expression
    of shouting.
  17. Dolphin

    Dolphin Senior Member

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    That might be because in the past (and still on yahoogroups, newsgroups, etc), one only has one font size as it's plain text.

    I think an argument can be made that a very large font size looks like shouting or something similar (i.e. is quite like using capitals).
  18. spindrift

    spindrift Plays With Voodoo Dollies

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    The problem I see here is that people often use larger font size to draw attention to something in the sense of highlighting it and
    if we just interpret larger font size as shouting we will be doing a lot of people wrong.

    In my personal interpretation Wilddaisy was trying to draw attention to her question not shouting.

    Either way I do not think font size regulation is something required to make a forum work.
  19. Dolphin

    Dolphin Senior Member

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    Well personally, I can only cope with so much stress because of my M.E. Arguments can get heated enough in plain text. People can emphasize points in other ways e.g. italics, bold, underlining, *stars*, etc. To me, very large text written in that way looks like capitals.

    (By the way, I wasn't the person who complained).
  20. spindrift

    spindrift Plays With Voodoo Dollies

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    My intention here is putting together constructive thoughts and I hope that you in no way feel that I am arguing with you.

    I see a difference between emphasizing something e.g. * , bold or I and trying to draw attention in the sense of "look here please" as in "waving to be seen from far away" for which I would use a larger font (not that I have ever had something that important to say :tear: ). I think taking away the option of font sizes would take away a visual form of expression that can be used in text.

    That being said would you feel more comfortable if members would voluntarily stick to a
    maximum font size and what would be a size that would make you still feel comfortable?

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