Found the CDC's CFS Press Conference Transcript

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Nov 4, 2006.

  1. mezombie

    mezombie Member

    Here's a link to the transcript of the conference:

    A summary of the press conference (much shorter, but includes most of the important stuff) can be found if you click the link on my earlier thread, "Video of CFS Press Conference..."

    The transcript really is worth reading![This Message was Edited on 11/06/2006]
  2. Daisys

    Daisys Member

    Ha! The CDC site is overloaded and I can't get in. I'll keep trying, but imagine a million CFS sufferers all trying with my level of motivation. It'll be awhile...

    Thanks for the info.
  3. Lolalee

    Lolalee New Member

    Mezombie, thanks for the transcript. I had no problem watching the video yesterday, but today I can't get in.

    Did you get the impression from the video that there is help available for CFIDS....that there are treatments that doctors are successfully utilizing? Also, the woman (CFIDS patient) who was interviewed said "when I was sick". Do you think she meant that she is no longer sick? I was confused about these things.

  4. mezombie

    mezombie Member

    It was confusing!

    I think the treatments that were discussed are the ones that are already available. No news on that front, unfortunately. The point, I believe, was to make doctors aware that at the very least the symptoms can be treated.

    As to the PWC, I got the impression she had improved a great deal, and probably meant to say "when I was very sick". If she's no longer sick, I'd love to know how she got there!
  5. mezombie

    mezombie Member

    Here's the transcript of everything the reporters were told. Let's see how much they pick up!
  6. karinaxx

    karinaxx New Member

    good work.
    keep the infos coming about press and videos, i am real interested and so hope that the rest of the world will get to hear it and will catch up.

  7. mezombie

    mezombie Member

    Thanks for the positive reinforcement. I often go into a CFS flare after posting, so it's good to hear the information is appreciated.
  8. mezombie

    mezombie Member

  9. shar6710

    shar6710 New Member

    Glad you found this. I still haven't been able to view the video but it's my impression that it is an edited version of the press conference.

    I encourage everyone to read the entire transcript not just the synopsis. There's a lot of good info in there.

    Best wishes,
  10. mezombie

    mezombie Member

    It's good to know the details of this press conference, no matter what you think of the CDC.

    I feel for those who aren't diagnosed, as well as those who can't find doctors to treat them. They are unlikely to be on this board, and I think they deserve support.

    Thanks to those who took the time to reply to this thread, and to all those who read the transcript.

    I hope more will do the same.

    [This Message was Edited on 11/06/2006]
  11. shar6710

    shar6710 New Member

    "It's good to know the details of this press conference, no matter what you think of the CDC."

    I agree whole heartedly. Maybe it's just me but the video really doesn't give a true picture of the conference. I thought there was a lot of really good info given out.

    The only minor criticism I have is that they chose someone who is recovered to represent us PWCs. Maybe everyone else was too sick to attend?

    There seems to be a little apathy on the board about this whole affair. I would have thought you would have gotten more response to this post and I have gotten almost none to my post about the tool kit.

    Maybe people are reading it and just not responding to the posts?

    Thanks again for finding this,
  12. kholmes

    kholmes New Member

    I printed out and then read the long transcript. Nancy Klimas's and Anthony Komaroff's comments are especially good.

    It's incredibly validating to hear Gerberding and Reeves, from the CDC, talk about the reality and severity of CFS, though they are hazy in spots. At one point, Gerberding mentions "two types of patients" with CFS, but doesn't explain what she means. I also agree that it would have been more effective to have someone still suffering from CFS, not someone who has recovered, as a representative patient.

    Though the CDC, and especially the NIH, have a long way to go, I think this press release is incredibly good news.
  13. julieisfree05

    julieisfree05 New Member

    I just to let you all know that it IS possible to recover from CFS!

    I got sick in 1991 after a toxic exposure, and developed CFS/FM and MCS. I was also "mis-diagnosed" with Gulf War Syndrome due to a misunderstanding about where the exposure occured.

    In April 2005 I started taking "Xyrem" (see my posts "Xyrem Saved My Life").

    My symptoms began improving within a few weeks and I continued to get better steadily over the next year. 10 months after starting the Xyrem, I was able to taper off of it. I also stopped taking medication to prevent migraines, and I haven't needed prescription pain medication for several months (I was still taking it for an occasional migraine.)

    The only thing I still take is a small dose of Klonopin at bedtime for RLS!

    I know that there is no one treatment that works for everyone, but for 14 years my doctors tried virtually everything out there until we found the one that worked for me.

    Recovery IS possible!

    - julie (is free!)
  14. mezombie

    mezombie Member

    Here's what the PWC who claimed she's recovered said at the press conference: "I personally was fortunate to have found a combination of complementary and traditional approaches that might not work for everyone but that were helpful to me and that involves a lot of dietary and lifestyle modification." Well, I've been doing that for 16 years and I'm lucky if I can take a shower without having to go back to bed for the day!

    I'm glad Xyrem worked for you. I've tried Provigil, which unfortunately had the same effect as drinking lots of coffee on me (able to function in a "hyper" mode, then crash). I've been taking a combination of Klonopin and a tiny amount of Sinequan for sleep as well as Mirapex for RLS, and that seems to work well. I don't have the energy I used to, but "chronic fatigue" is no longer a big symptom for me since I'm taking the meds listed above. I do , however, have post-exertional "fatigue". The point is, my main problem isn't being chroncially tired, and I do not have narcolepsy. I also don't have FM.

    I really don't think my symptoms, the most debilitating of which are neurological (dizziness, nausea, headaches, weakness, confusion, difficulty processing information and remembering anything, etc.) have to do with any unresolved sleep problems. I have to lie down and close my eyes often to deal with my symptoms, but I don't need as many "naps" as I used to. However, I do have an appointment with my neurologist tomorrow, and will ask him what he thinks about Xyrem.

    I do think it's important for anyone who feels they have reovered (especially with just one drug) to take into account that there is no magic cure that will work for everyone. All of us on this board have different symptoms, have been sick for different lengths of time, and have different levels of functioning. There are an awful lot of factors that impact what works for whom.

    I appreciate your information, really! It's just that after 16 years of being very ill, I'm pretty skeptical.
    [This Message was Edited on 11/06/2006]
  15. mezombie

    mezombie Member

    And thank you, Shar6710 and Kholmes, and everyone else (whose names I can't remember --sorry!) for plugging it!
    [This Message was Edited on 11/06/2006]
  16. mezombie

    mezombie Member

    So, if you still can't access it, read this! You can always print it out to read later.
  17. Daisys

    Daisys Member

    I'd like to add to the comments on getting cured. I got CFIDS in 1978 and FM sometime in the early 90s. So, I've been trying a lot of different things for quite awhile!

    Eight months ago, I found a doctor who trained in the Teitelbaum protocol. He added things of a prescription nature to my regimen which helped some. Then I started taking xyrem. I improved dramatically right away. Getting the deep sleep I needed so desperately turned my life around. I went from almost bedridden to almost well this last 5 months.

    I was doing and taking all the right things, but didn't see great improvement until I started on xyrem. It isn't a magic pill, but the deep sleep allows my body to put all the other supplements, hormones, and herbs to use. The human growth hormone that's released in deep wave sleep is a wonderful thing!

    The only 2 problems that keep me from declaring myself in total remission is soreness in my upper back, and I still have a viral load. I've got an appt. to see a physical therapist and want to look into trigger point therapy, or tens machine treatment. The viral load I hope will respond to Tranfer Factor: I know it's EBV so I know which one to get.

    I may not ever be cured, but I hope to soon be in the same boat as the woman interviewed at the conference. If I can't improve over the state I'm in right now, at least I'm not miserable and can keep up with my normal life schedule most of the time. If I miss taking xyrem, I go back to that old misery the next day.

    Hopefully, someday, I won't be spending hundreds of dollars a month, like I am now to be feeling this good!
  18. mezombie

    mezombie Member

  19. place

    place New Member

    I'm sorry to hear about your back. For a while there I thought you were pain free? Did all the muscle pain go away and then come back?

    Or did some of it come back?

    You know, when ever I don't have a sinus infection and I have tons of energy, I do a lot of stuff but....

    Even though I have the energy and i don't feel tired, my viral infections show up. I start to get cold sores, I still have energy and it does not phase me but I know my viral stuff is acting up. And unless I want people to look away when they talk to me, I better cool it.

    I wonder since you have some of your energy back that some how your EBV is causing the back pain (I don't know much about EBV). Does resting (even though you don't feel like it) help?

    It's so funny, I have a viral belief. One summer, both my parents, me and my husband got plantar faciitis (spelling?). We all live in the same area. We all agreed it was due to virus or becterial.

    Let us know how you are doing, I think we are all pulling for ya!
  20. Daisys

    Daisys Member

    I did become almost pain free, but still have this stubborn soreness in my upper back. I will definitely be looking into it's cause. It's not fascial--that's gone. It might be trigger point type pain. Who knows what causes those knots--It wouldn't surprise me if they're viral driven.

    Also, if I overdo it, I still get a sore throat. I always called it my first warning. If I still push myself, I can relapse. It takes a lot more overdoing it to get the sore throat nowadays.

    Other than that, I have SAD, so not as great as I was. I look forward to Spring! And I am 55 YO. I'm not sure what normal should feel like. Do healthy 55 YO women have sore backs anyway?

    Thanks for pulling for me! I sure appreciate it!

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