Easy link for Chronic Fatigue Syndrome Advisory Committee Meeting (Day 1)

Discussion in 'Fibromyalgia Main Forum' started by Sacajawea2, Jun 15, 2009.

  1. Sacajawea2

    Sacajawea2 Member

    This is day one of the video from May 27-- this link should take one right to it instead of having to scroll through the rest of the videos in the other link I tried to open earlier to watch again. Some have suggested even if you are unable to watch it, to let it play in the background to get it counted.

    If this works, I'll post the second day as well...



    Skeptic, trying to remember how to make a link highlighted, perhaps someone else recalls, as between my foggy brain and faulty internet at the moment, not able to do it...
  2. skeptik2

    skeptik2 Member

    This is great! Easy to do. Play in the background works well for me when I can get to a computer. (It's complicated) Only have webtv; cannot highlight links anywhere, can only email from the original site.

    Thanks for rememebering; I'm sure others will want to know, for sure!

    Take care of you, and thank you for your efforts on behalf of us all..

  3. mezombie

    mezombie Member

    Thanks, SJ!

    I let it run on my computer last night while I was sleeping.

    It's also easy to log in, minimize the window, turn off the volume, and continue with other stuff on the computer.

  4. Sacajawea2

    Sacajawea2 Member

    Yes, that's easy enough to do! Not feeling too well but I'll stick the day 2 on later if I can come back on here...hope there are more able to watch it this way.

    How long will this "count"? Is there a deadline?

  5. mezombie

    mezombie Member

    Here's the direct link to the second day of the CFSAC meeting:


    SJ, I suspect viewers will be counted as long as the videos are available.
  6. AuntTammie

    AuntTammie New Member

    I had to play this in the background w/o the sound bc I was getting so thoroughly PO'd at Reeves' blatant lies, not to mention getting really upset about the stats he was giving re: how many people have accessed (and/or cited in their own papers) the info that the CDC has published - in other words, there is a huge, huge number of people that are using the CDC's bs propoganda as their source of supposedly accurate info re: CFS - I knew that, but I didn't realize just how bad the actual numbers are (esp when compared to other sources)

    there has to be some way to get them stopped and discredited, and get more accurate info spread....and get the money they are wasting taken away and given to valid research
  7. skeptik2

    skeptik2 Member

    We are trying, believe me.

    If all would write to the Sec., DHHS, Kathleen Sebelius and tell her the CDC is in real danger of a class action lawsuit, or a Congressional Inquiry very soon, it might help.

    p.s. SOMEBODY!!?? Know a good law firm to take this on? I'd be the first to sign on to it, believe me.
  8. AuntTammie

    AuntTammie New Member

    I know we are trying, and I have written to her (but not about the lawsuit possibility - just the general situation)....I've also signed petitions and stuff and will continue to do what I can - it is just so discouraging and it so often seems futile esp when encountering the reality of all that the CDC has done/failed to do and esp when I feel so powerless and am barely functioning at all (as are many of us).....it's a David and Goliath situation (the good thing about that, though, is that David came out the victor thanks to his faith.....for those of us who believe in God, maybe this is something to hang onto)

    I also know that you are one of the driving forces for advocacy stuff on here and I am thankful for all that you are doing[This Message was Edited on 06/18/2009]
  9. skeptik2

    skeptik2 Member

    Thank you, I appreciate all you have done! Especially with our little energy, we have to focus just sometimes on how the future will be for our loved ones who may be exposed to this dreadful disease.

    My life is advocacy now, that and getting a treatment so my grdau will have a life. She has had ME for 9 yrs now, and is only 21.

    I took her in last week and will take care of her and fight for her right to care until I die. Today her new dr., a brilliant one, told her she needed therapy, he didn't believe in 'cfs'. He probably reads the pulp fiction the CDC puts out to the medical professionals in this country; however, I have also found that some drs say that because they actually KNOW it is garbage, and they have found many things wrong in their patients. Time will tell.

    Yes, faith can get us through the roughest of times, and I encourage all of spiritual persuasion to rely on it for strength. Thank you for reminding us.

    Take good care of you, and watch for the advocacy alerts we here are going to try to put together, ok?

  10. Sacajawea2

    Sacajawea2 Member

    Mezombie for putting up the second day...hadn't enough energy to get on here the last few days.


    Take Care,
    [This Message was Edited on 06/22/2009]
  11. simpsons

    simpsons Member

    thanks for this link i.m writing it to cd or my friend is so i can show bits to people

    they have to video cast future meeting s it s the law they were breaking their own laws by not doing so as we are disabled and need our disability taking into account


    thank you for all your hard work maybe we should do a post to ask what legal options there are available human rights lawyers that work for minority or groups of people who are discriminated against as we are.

    the cfsac meeting were talking about discrimination and discussing how a patient would go about lodging a complaint so they are well aware of the threat

    its a good idea to keep it runing in the background so you can pick up bits. could anyone give time frames so that we could skip to different bits ie different speakers and note the time and post it for others?

    so sorry to hear of your grandchild and good for you for being so strong willed and fighting.

    peace love and goodwill
  12. QuayMan

    QuayMan Member

    Good idea, simpsons.

    I've been busy in recent weeks (with other ME work) so would love to have some time-frames. I don't see myself having the time to watch the two days or even half of it so as I say, I'd love if anyone was taking notes of when different bits are on, especially bits people think are good (or even "bad" if it means somebody could be caught out/quoted).
  13. Sacajawea2

    Sacajawea2 Member