Senate Briefing on Chronic Fatigue Syndrome

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Dec 3, 2008.

  1. bjsmit1

    bjsmit1 New Member

    Hello all,

    On May 8, 2008, The CFIDS Association of America sponsored a Senate Briefing on Chronic Fatigue Syndrome, with the aid of Senators Tom Harkin and Arlen Specter. I was able to take video of it, and have finally gotten around to editing it, and getting it posted on YouTube.

    The Briefing was about 60-70 minutes long, and YouTube has a limit on video length; all videos must be less than 10 minutes. Anyways, I have edited the clips, and created a 10 part series that documents the whole briefing, divided by presenter. The following are the descriptions, and url's of all 10 videos. They are in chronological order. I hope everyone gets something out of them...

    Part 1: Introductions & Overview - Kim McCleary - Senate Briefing

    Part 2: "Promising Avenues in Current CFS Research" - Dr. Anthony Komaroff 1 - Senate Briefing

    Part 3: "Promising Avenues in Current CFS Research" - Dr. Anthony Komaroff 2 - Senate Briefing

    Part 4: Economic Impact Discussion - Kim McCleary - Senate Briefing

    Part 5: "Challenges in CFS Patient Care" - Dr. Lucinda Bateman - Senate Briefing

    Part 6: CFS Patient Challenges Discussion - Kim McCleary - Senate Briefing

    Part 7: "CFS: The Human Toll" - Mr. Scott Simon 1 - Senate Briefing

    Part 8: "CFS: The Human Toll" - Mr. Scott Simon - Senate Briefing

    Part 9: Closing Remarks - Kim McCleary - Senate Briefing

    Part 10: Final Discussion - Kim McCleary - Senate Briefing

  2. gapsych

    gapsych New Member

    Thanks for all your hard work editing to make the Senate Briefing on CFS, available for all of us to watch.


  3. bjsmit1

    bjsmit1 New Member

    Thanks. Ironically, it was more difficult than I thought it would be due to YouTube's 10 minute limit -- and my lack of technical expertise ;-)

    I've experimented with google video, because I believe they will host videos longer than 10 minutes, but haven't had success uploading anything...

    I hope you enjoy the videos (I'm not sure "enjoy" is necessarily the appropriate word for this...)
  4. Forebearance

    Forebearance Member

    Thanks a ton, Brian! I look forward to more videos in the future. ;-)
  5. SpecialK82

    SpecialK82 New Member

    Thanks for putting these videos out for us to see, I look forward to viewing them!

    It's nice to see the work being done for us - even though we hear about some of it, it is much more meaningful to see it with our own eyes.

    Your a gem!

  6. bjsmit1

    bjsmit1 New Member

    The videos are actually more difficult to capture than one might think.

    Obviously, any government building in DC has very tight security, so it can be difficult to even get a camcorder in the building.

    Also, for example, at the CFSAC meetings they don't allow video recordings. We've been trying for years to get them to do this, or at least offer a video feed via the internet, but from what I understand, they've always said no.

    The meetings, however, are a matter of public record. One can get minutes of the 2 day meeting, but it's as thick as a book (and in my opinion, done on purpose). They actually have professionals taking audio recordings of the meetings, to be transcribed into minutes. My first CFSAC meeting was in May 2008, where I testified. At the time my father had been battling cancer, and I wanted to record my testimony for him to see. I explained my situation, and after some negotiation, I was allowed to sit at the head of the table, to avoid capturing anyone from the audience on film. And I am so grateful that I was able to get a video of it, because my dad died about 2 months later, and he got to see my testimony...

    At the most recent meeting in October, I brought my camera again, and although I did record some of the meeting, I was eventually forced to turn my camera off, and put it away...

    So with all that being said, I will continue my best to get as much video of CFS-related events, as I know that sometimes this is the only way the patient community can learn about what is going on.

    And I do try to attend as many CFS-related events that I can, but my health is obviously an issue, as is money, school, and more recently, being there for my mom, as we both deal with my father's death.

    But I'm glad I've been able to share the videos that I've captured so far...
  7. Lichu3

    Lichu3 New Member

    I once was talking to someone more in the know than myself about taping CFSAC meetings (we were talking about C-SPAN) and she brought up that her suggestions that they be taped were rebuffed partly because of privacy issues. Which makes sense. Some people with CFS might not mind testifying one-time in a room but do not want to be seen around the U.S. or the Internet. On the other hand, if people testifying have no issue with this, it should be allowed.
  8. bjsmit1

    bjsmit1 New Member

    I agree completely. For all testimonies that I recorded during the Public Comments session, I got written and verbal consent from the person testifying. And I set up my camera at an angle where it would not record anyone in the audience. The first time I testified at a CFSAC meeting in May, I only recorded my testimony. In October, like I said, I got permission from all the presenters.

    The whole meeting is a matter of public record, but experiencing it from a patient's perspective, I can totally appreciate and understand why some might not want to be recorded on video -- for most of us (myself included), it is a very personal subject.

    With regard to the committee, I think they should have no issues with being on video. Like I said, professional audio recording takes place, and minutes of the 2 day meeting are available to the public. By the very nature of being on the committee, I think its members should expect to be a public figure. It is physically impossible for most with CFS to attend these types of events, and a webcast would allow the patient population to at least watch the meetings. I'm guessing that someone who is sick in bed with CFS is not going to have the energy or the cognitive stamina to read through almost 600 pages of minutes, so why not make it more accessible, without filming the audience.

    In addition, the reason I got shut down in October 2008 was because of the subject matter that was being discussed -- the "powers that be" from the CDC apparently didn't want the discussion to make it out that door...
  9. bjsmit1

    bjsmit1 New Member

    For those interested, you can sign up for a free monthly electronic newsletter called the CFIDSLink. Just go to the following url:

    Links to these videos, and others will be included in future CFIDSLink editions.
  10. Forebearance

    Forebearance Member

    Wow, did you hear about Cort Johnson's latest newsletter? It sounds like he really tells it like it is about the CFSAC meeting.

    Wouldn't it be great if Dr. Reeves was fired?
  11. mindblower

    mindblower New Member

    "Wouldn't it be great if Dr. Reeves was fired?"

    Do you have a link to or better, if it's alright, would you copy/paste here the part of Cort's latest newletter covering this meeting that supports firing Dr Reeves?

    I can think of a few reasons in my own mind that I think justify his being fired, but I'd like to see if the complacent and overly presumptive behavior, to say the least, towards ME/CFS I've seen from him in the past has continued.

    MB[This Message was Edited on 12/06/2008]
  12. bjsmit1

    bjsmit1 New Member

    The following is the link to Cort's newsletter about the October 2008 CFSAC meeting; you have to scroll down about 1/3 of the way to the title: "Burning Bridges: CFIDS Association of America Slams CDC CFS Research Program". Please read everything Cort has to say regarding this issue; it's quite informative.

    [This Message was Edited on 12/07/2008]
  13. bjsmit1

    bjsmit1 New Member

    At the CFSAC meeting in May 2008, Dr. Bill Reeves of the CDC reported on the prevalence figures of CFS, as well as other CDC related material. He repeatedly referred to the CFS patient population as a "body count".

    To this, CFSAC Chairman, Dr. James Oleske stated:

    "I have one request -- please let's not use that term 'body count.' I think that it's offensive. It's patients, it's people who are ill, it's the ones we have to serve and care for. My son was in Iraq and I know what a body count is, and I don't want to hear it about patients who we're taking care of."

    This occured during the morning session of the first day of meetings on May 5, 2008. Dr. Reeves left shortly after lunch on May 5th, before any of the public testimony. In addition, he did not show up at all on the second day of the meetings on May 6, 2008.

    That's all I will say about Bill Reeves...

    And people wonder why they don't allow video recording at these meetings...

    I'm just glad I wasn't there for that part of the meeting...
    [This Message was Edited on 12/07/2008]
  14. mindblower

    mindblower New Member

    "Burning Bridges: CFIDS Association of America Slams CDC CFS Research Program"

    Great article by Cort covering the CAA's appropriate and very appreciated by me(as well as others I'm sure) combative stance these days. And Cort has hardly been someone with a bias against Dr Reeves over the years, thus very credible reporting in my view.

    In fact, he was someone with whom I just a year or two ago had a few critical(friendly) words for taking too lightly Dr Reeves' rather cavalier public jokes and commentary then about this diagnosis. Reeves comments suggested CBT had been sublimely reinforced for ME/CFS, as he previously expected, as the appropriate first line treatment for our condition, based on the CDC's newest data.

    He seemed very satisfied that these "fatigue syndromes"(no such thing as a more specific ME/CFS to him it appears) are clearly managable by helping people diagnosed as such correct the presumed negative thinking we have. Which produces our symptoms, according to his theory, in response to stressful life events we've presumably accumulated.

    But also tragic recently is the $1.5 million that was available-unspent by Reeves for a time for lack of ideas, per Cort's article, not going to projects that would advance conquering this condition:

    1) A wider in scope gene profiling study of ME/CFS cases, not just our HPA axis genes.

    2) More advanced sleep studies using the newest technologies in this area.

    3) The Dubbo researcher's next yet still on hold project for ME/CFS that focuses on our brains; they postulate a post infectious brain injury will be found by this study in those of us who remain sick more than two years post onset.


    [This Message was Edited on 12/08/2008]
  15. SpiroSpero

    SpiroSpero New Member

    thx a lot for your work.
  16. jasminetee

    jasminetee Member

    Brian I really appreciate you taking the time and energy to record this for us and post it here. I'm glad to see Cort and the CAA finally coming around to realizing the truth about the CDC and Dr. Reeves too.

  17. Rafiki

    Rafiki New Member


  18. bjsmit1

    bjsmit1 New Member

    Like I've stated before, I can not put into words how dedicated Kim McCleary is to her work, and how hard she works for the CFS patient community. I've said it before, but without her sound leadership and astute judgement, I firmly believe The CFIDS Association would fail to exist, and the CDC scandal 10 years ago literally would have gone unnoticed. Not only does Kim McCleary work long hours, but she is magnificent at what she does; she's not just a hard worker -- she's an extremely intelligent and efficient worker as well.

    People have questioned Kim and The CFIDS Association in the past for being too close to the CDC. It is my very firm opinion that nothing could be further from the truth. Ten years ago, Kim McCleary literally spent hours and hours digging and investigating the misappropriation of the $12.9 million in research funds by the CDC. She didn't have help; she literally uncovered the accounting scandal by diligently calling scientists to inquire about the "CFS research" they were supposed to be performing. Bill Reeves was credited as being the "whistleblower" that uncovered the scandal, but again, it is my very strong opinion that this was not the case...

    When Congress is auditing the government agency that one works for, and that person holds a decision making position with a lot of authority, one might be inclined to throw everyone else under the bus in an effort to save themself, and be heralded as the altruistic "whistleblower"...

    Again, this is only my opinion; I do not speak for Kim McCleary, The CFIDS Association, or Bill Reeves for that matter. I just have a very strong "intuition" when it comes to the matter...

    If it appears to some that, "Cort and the CAA (are) finally coming around to realizing the truth about the CDC and Dr. Reeves too." -- again, it is my strong opinion that this is very far from the truth. After the misappropriation scandal 10 years ago, I don't think anyone would have imagined that the CDC would not learn it's lesson, and we'd be in the situation we are now -- with the infusion of funds from 2000-2005, and the Public Awareness Campaign in November 2006, it appeared that the CDC was starting to get their act together. If they would have gotten serious about CFS, can you imagine where we would be? They got serious about AIDS, and look at Magic Johnson. They are the largest and most resourceful entity in the world by far, extremely capable of performing the necessary research for CFS -- for some reason, they just choose not too. I think some confuse the notion of attempting to get the CDC to increase the quality and quantity of work for the CFS patient population with being "cozy" with the CDC -- not the case. If some XYZ entity had millions of dollars to spend, and were capable of actually making a difference with regard to CFS, I would be the first to try to court them...

    And we know that there are credible researchers out there who would love to have funding to study CFS -- the response to The CFIDS Association's $1 million research campaign in 2008 is evidence of that. And look at the amazing Pharmacogenomics research that was done in a relatively short time by the CFS Computational Challenge (C^3) before Dr. Suzanne Vernon left -- which, in my strong opinion, was set-up, facilitated, and made possible by Dr. Vernon and not Bill Reeves...

    Anyways, I'll get off of my soap box for now. Like I always say, I only speak for myself, and this is only my opinion -- some might call it an informed opinion, but it is still only my opinion...

  19. jasminetee

    jasminetee Member

    I typed an answer to this days ago but it's still not here. I appreciate you explaining more about Kim and I'm glad to hear she's been hip to the CDC all along.

  20. aftermath

    aftermath New Member

    If the CAA is indeed making a push for the ouster of Dr. Reeves, do they have a letter writing campaign set up?

    This is the kind of activism we need to get things straight--the national organization decides on a goal, and patients follow up with a flurry of paper letters (not e-mails, which are easily disregarded).

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