CFS Advisory Committee Testimony - Brian Smith

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Nov 21, 2008.

  1. bjsmit1

    bjsmit1 New Member

    For those interested, the following is a link to a video of my testimony before the CFSAC in May, 2008:

    The following is a link to the transcript of the same testimony:

    I also testified before the same committee in October, 2008. The following is a link to that testimony:

    You may have to copy and paste the url's into your browser.

    Brian Smith
  2. gapsych

    gapsych New Member

    Thanks for you heartfelt testimony. You have taken a tremendous step and should be proud of yourself.

    Thanks from a friend with CFS/ME.

  3. SpecialK82

    SpecialK82 New Member


    Thank you so much for the considerable time and energy used not only to prepare your testimony, but for the travel and presentation as well.

    You are so well spoken and have truly helped our cause by doing something that many of us feel to sick to even attempt.

    To not get the recognition that we are truly sick and in desperate need of research and funding is more frustrating for me than even being sick. I hope your testimony and others like yours will get the ball rolling.

    God Bless you and good luck in your on-going battle.

    Thank you again for speaking for us!
  4. bjsmit1

    bjsmit1 New Member

    Thanks for the words of encouragement. I've been to 2 of these CFSAC meetings so far, and if it weren't such a serious subject, it would almost be laughable at the utter mismanagement of a major health crisis by the federal government. Some members of the committee really care, and are struggling for reform, recognition, change, etc. But the committee also has representatives from the CDC, NIH, DHHS, SSA, etc. and for the most part, they treat this 2 day meeting as a paid vacation, at the same time making fools of themselves by trying to pass the responsibility onto someone else. It truly is government bureaucracy at its worst.

    The CDC continues to fail the patient community, and it is absolutely criminal. $4.7 million in 2007 for the CDC's CFS research program, and NOTHING to show for it. They are the largest and most resourceful entity in the world to tackle this problem, but time after time they drop the ball -- with the exception of the infusion of millions of dollars from 2000-2005, due to the huge scandal in the late 90's regarding the misappropriation of millions of dollars that Congress had earmarked for CFS research.

    Just for disclosure purposes, I thought that I would mention that I am on the Board of Directors for The CFIDS Association of America. I'm not trying to push any agenda. I'm just one person, who is disgusted with the lack of response by OUR government, trying to make a difference, and hopefully provide a voice for those that do not have one...

    Brian Smith

    [This Message was Edited on 11/22/2008]
  5. aftermath

    aftermath New Member


    Your story sounds very much like mine... Except that I got sick at 19 and I am now in my early 30s.

    I have managed to work full-time in a 40 hr/wk government job that is way beneath my credentials. Still, the hours are better than corporate and I crawl into bed the minute I get home.

    You can never fully understand just how incompetent government is until you work in it. I am actually considering bailing for med school. I just had my first interview last week. It's going to be a big decision, as I don't know if my health will be able to handle the MS3 year.

    Nothing is ever going to happen unless the patient community organizes behind the CFIDS Association or another major entity.

    Because of just how awful this illness is and how terribly we have been treated by the govt and healthcare community, you would think that all of the patients would band together like an organized crime group.

    People spend thousands on doctors who can offer no reliable treatments and nutritional supplements that are questionable at best--yet membership in the national organizations is pitiful.

    I joined the CFIDS Association last year. I urge EVERY SINGLE PERSON reading this thread to join as well. If you have $35.00 to spend on treating CFS, the first place it goes should be to this organization or another similar group of your choice.

    We should be bombarding elected reps with letters as organized by these groups.

    This is the only way that things will ever change...

    As I have said before, the $4.7 million in the CDC's CFS research budget couldn't buy the toilet paper at the AIDS, Cancer or MS labs...

    [This Message was Edited on 11/22/2008]
  6. bjsmit1

    bjsmit1 New Member

    Thanks for the encouragement and for sharing your "story".

    I have the same trepidation about Med School. At times, I think I could handle the academic load, but I'm wary about 3rd and 4th year, as well as residency.

    I took the MCAT in August 2006 -- the last time they administered the 8 hour, paper and pencil exam. I did pretty decent, and applied to a few schools, hoping for admission in the fall of 2007, but my dad was diagnosed with terminal cancer (Multiple Myeloma) in March 2007, and was given 2-3 months to live. I finished my semester early, and moved home at the end of April 2007 to care for him (and because it was becoming more difficult to live on my own due to CFS). Anyways, I basically gave up my dream of Med school, and spent nearly everyday for the following 16 months caring for my dad. I took complete control of managing his health care, and ironically, was able to be his advocate due to the "training" I had from dealing with CFS. He passed away a few months ago, and I'm still uncertain about pursuing Med school, but I'm currently in a graduate Pharmacology program. I have no regrets about my decision to put my life on hold for my dad though...

    With regard to garnering the support of the CFS patient population, their family and friends, etc., I think it is long overdue. The latest prevalence study estimated that up to 4 million Americans have CFS. I know what it is like to be financially strapped, but $1 from each patient could advance our cause by leaps and bounds.

    The CFIDS Association was able to raise just over $1 million this year, strictly for research. With the guidance of Dr. Suzanne Vernon, they will be funding 6-8 new studies in the next 4-5 weeks. I might be biased, but that is more research that is being facilitated than by any other entity, including the CDC! It is a great start in the right direction, but clearly, more resources will be needed to conquer CFS...

    I firmly believe if we were able to band together behind an organization (CFIDS Association), we can facilitate an environment for social change. Until all the in-fighting within the patient community stops, it is likely that we will all be stuck in limbo. The government has proven time and again their inadequacies; if we formed a coalition, it could lead to a tipping point, similar to the AIDS movement in the 80's. I don't think it's too far fetched either -- look at the Obama campaign. It's a perfect example of what is possible if enough people come together for a common cause...
  7. bjsmit1

    bjsmit1 New Member

    If anyone is interested, I posted video of my testimony before the CFSAC in October 2008. It is in 2 parts; the following are the url's:

    PART 1:

    PART 2:
  8. sturg1

    sturg1 New Member

    Brian, I am at a loss of words... my heart felt thanks goes out to you and others that speak for all of us suffering this horrific illness.

    I'm sooooo thankful for your efforts,
  9. aftermath

    aftermath New Member

    I agree that the name is trivializing.

    Still, I'm not all that crazy about "ME." First, it sounds like a takeoff on "MS." I wish it had been something more different. I can just see the articles now accusing us of subterfuge.

    Second, the fact that it is an extremely commonplace noun is going to destroy Google search rankings, etc for the acronym. The full name is going to be difficult for a lot of people to spell out.

    The name change is a fantastic thing--I just wish it were better thought out.
  10. TeaBisqit

    TeaBisqit Member

    Brian, I don't understand how they can sit there and be all smug and not care. Why aren't these people afraid of catching this disease? Why aren't they afraid that their families or someone they care about could catch it? This is what never makes any sense. People are still coming down with it. It hasn't gone away.

    I wish we could march on Washington and all that, but the sad truth is, so many of us are just too sick. I can barely do the small things I need to do just to live. I almost couldn't get dressed today at all. All I wanted to do was check my mail and get something out of my car and I really, really struggled just to do that. I just don't have the physical energy or stamina to fight anymore. I've had this disease for about eighteen years now. It's not getting better with time, it is getting worse. And the small amount of family that was supportive of me passed away. Now I have nothing, and I'm feeling pretty broken about now. I don't think I have any real fight left in me anymore. If I had the physical stamina, I'd be fighting, but it's all gone.
  11. bjsmit1

    bjsmit1 New Member


    I'm not feeling the best today, so I apologize for the short answer -- I'll try to provide more detail in the future.

    With regard to forming local chapters like the MS Society, etc. -- I've thought about this and discussed it with a number of people. Honestly, right now, I don't believe there is enough resources available to accomplish this. Also, there isn't enough cohesiveness among the CFS patient community -- in my opinion, there is too much "in-fighting" among all of us, and until we can all get beyond our different opinions, etc., I don't think we'll have the momentum to facilitate such a change. We desperately need a "tipping point" to lead to a social change, but everyone needs to be on board for that to happen -- just my 2 cents...

    Regarding Kim McCleary (her last name isn't Kenney) -- I have never met someone who works so hard, and is so dedicated to what she does. Without her hard work and long hours, I firmly believe that the CFIDS Association would not exist. The only person I have ever met who works as hard as her, and who sacrifices so much for her job, is my mom -- but I'm biased about my mom ;-)

    Dr. Suzanne Vernon is probably the most brilliant person I have ever met. The work that she has done to further our cause is unbelievable, and I think is all too often, not recognized. Since she became the CFIDS Association's Scientific Director barely 1 year ago, she has truly transformed the landscape of CFS research. Not only is she a brilliant scientist, but she is able to translate the science of CFS in a way that non-scientists can understand -- she has invigorated the scientific community with regard to CFS, and she has facilitated research into CFS that is amazing. Not only this, but she actually cares -- she left a very secure position at the CDC because she truly cares about the CFS community, and our collective plight...

    I hope this answers your questions. Again, I'm not feeling the best, and will try to provide more insight in the future.

    Brian Smith
  12. SpecialK82

    SpecialK82 New Member

    Thank you for your insight on CFIDS Association, Kim McCleary and Dr. Suzanne Vernon. I have just found this organization this year, joined and donated to the million $$ campaign.

    As there have been different opinions on this board of the CFIDS Association effectiiveness, I am thrilled to hear that you have a good opinion of the people running the show. I am equally thrilled that you are on the Board.

    I feel secure in my decision to fund this organization and will continue to do so in the future.

    Thank you again for you opinion and please let us know what else we can do to get involved and join together as one community!

  13. bigmama2

    bigmama2 New Member

    welcome. and THANK YOU for being on the commitee and testifying. i am a member of cfids association also. we must band together!!!!!!!!!!!!! best of luck to you

  14. bjsmit1

    bjsmit1 New Member


    Thank you so much for your kind words and encouragement.

    More importantly, thank you for supporting The CFIDS Association, and helping to ensure its long term financial health. As an organization, The Association is absolutely vital to conquering CFS -- from the work they do to police the CDC (Kim McCleary), the vital role they play in Public Advocacy in Washington DC, to the extremely important research, as well as the collaborations they facilitate among researchers...

    It is a sad fact, but The CFIDS Association really is the only organization that is performing these tasks, as well as others, on a wide scale. As a patient, as well as a Board member, I wish we had the resources to tackle CFS without the federal government, or any other groups holding us back. But the reality is that The Association really does a wonderful job of furthering our cause on a "shoe-string" budget. That's why I appreciate individuals like yourself who donate to further our cause -- it means so much to me as a Board member, but more importantly, as a patient. Thank you.
  15. Forebearance

    Forebearance Member

    Thank you so much for sharing this video, Brian!

    And thank you for all the work you do on behalf of all of us.

  16. jasminetee

    jasminetee Member

    Thank you so much for your excellent testimony Brian. I didn't realize at first that you had made 3 You Tube Videos until I read that on here. You made good points in all of them and it's helpful to hear your personal story.

    It's good to hear your take on the people who work at the CFSAA. I was under the impression that they had been bought off by the CDC to promote GET and CBT. That really is all I've seen them do but I hear they're actually going to start looking at biological factors. I hope so. That's been a big part of why there has been so must distrust and infighting among us. I was surprised when I read that Kim is just now realizing that the CDC has no interest in really looking into biological testing. I'm sure she does work hard and mean well and I'm looking forward to seeing what kind of testing they will actually do now. I've been a member all these years because I do believe in supporting an organization for us, my folks are also members.

    Thank you so much for your continued advocacy and hard work to get CFS recognized by our govt. I'm sorry your father passed away as well. Prayers to your family.

    [This Message was Edited on 11/30/2008]
  17. aftermath

    aftermath New Member

    The CDC is the same group of sc*mbags that misappropriated over $5 million dollars intended for our benefit and diverted it to other programs.

    The CFIDS Association was essential in catching them.

    As I have repeated ad nauseam, our only chance is to band together under this organization and use what little energy we have to write letters in support of their campaigns.
  18. bjsmit1

    bjsmit1 New Member

    Actually, the CDC misappropriated $12.9 million in funds that Congress had earmarked for CFS research nearly 10 years ago. If not for the diligent efforts of Kim McCleary, this scandal would have never been uncovered. She literally "policed" the CDC, and discovered the nefarious actions of the CDC. Her persistence and resourcefulness is what lead to the CDC paying back the misappropriated funds from 2000 - 2005, and the increase in quality research during that period.

    As I previously stated, I have never met anyone who is as passionate about her work as Kim. I firmly believe without Kim's hard work and dedication, the strides that have been made in the arena of CFS would not have been possible.

    I do not speak for Kim McCleary, but in my opinion, the statement that "... Kim is just now realizing that the CDC has no interest in really looking into biological testing. I'm sure she does work hard and mean well..." is the furthest thing from being accurate. Through Kim McCleary's leadership, The CFIDS Association has repeatedly held the CDC accountable for their actions, and continues to do so.

    Just one month ago, Kim McCleary testified at the CFSAC meeting, and once again, exposed irregularities in the spending of research funds for CFS by the CDC. The following url is the text of her testimony:

    I realize the frustration of many in the CFS patient community. As I stated in my CFSAC testimony in May, I am frustrated as well -- I don't think it is possible to NOT be frustrated. But casting judgment on The CFIDS Association, Kim McCleary, Dr. Suzanne Vernon, etc. does nothing to progress our common goal of defeating CFS.

    As an individual who has suffered with CFS for nearly 14 years, I wholeheartedly believe that without the extremely effective efforts of Kim McCleary, as well as everyone else involved with the Association, the CFS patient community would not be where we are today. Many people fail to recognize the accomplishments we have made as a community. The landscape of CFS, with regard to Research, Public Policy, Education, Advocacy, etc., is in a much better position today due to the efforts of The CFIDS Association -- again, this is just my personal opinion; I do not speak for The CFIDS Association, or any of it's staff...
  19. bjsmit1

    bjsmit1 New Member

    I agree with your statement that "heads should roll". It is criminal what is happening, regarding the utter mismanagement of millions of dollars that are directed for CFS research by the CDC. They are the largest and most resourceful entity in the world to tackle this problem, and with the exception of the payback period from 1999 - 2005 (from the 1998 misappropriation scandal), I believe that the most meaningful research they performed was the CFS Computational Challenge (C^3), which we have Dr. Vernon to thank for.

    With regard to the discovery of mismanaged funds, from my understanding, it takes a lot of resources (time, money, energy, etc.) to "police" the "powers that be". The CFIDS Association, and more importantly, Kim McCleary, has done an excellent job of policing the CDC. In Kim McCleary's statements before the CFSAC in October 2008, she stated that the reason for her testimony was to enlighten the members of the CFSAC about the problems within the CDC's CFS research program. McCleary stated:

    "In conclusion, when this committee convened last May, you sent a strong “no confidence” signal to DHHS and CDC about the leadership, direction and pace of CFS research at CDC. In light of next week’s peer review of the CFS program, I urge you to send an even stronger signal to the Secretary and CDC’s leadership to decisively address this irresponsible management of the CFS program."

    Honestly, I am at a loss for words on how to make the CDC "get it". With the launch of the Public Awareness Campaign in November 2006, it appeared that the CDC was finally headed in the right direction with regard to CFS; apparently, that is not the case.

    The main reason for the CFIDS Association's expanded Research program is in response to the lack of a meaningful program at the CDC. Because the CDC is not going to do it's job regarding research, The CFIDS Association has stepped up to fill this gap.

    With regard to helping, I strongly encourage everyone to contact their member of the House or Senate -- not only because of the issues with the CDC (although they are HUGE), but also to raise awareness, increase education, and hopefully, effect change. I have done this, and will continue to do everything in my power to help our collective cause in any capacity I am capable of -- every effort, no matter how big or small, counts, and makes a difference.

    I hope I have answered your questions. Again, I do not speak for The CFIDS Association, nor do I speak for Kim McCleary. I am just one person with CFS, who is disgusted with the lack of a meaningful response to such a major public health crisis; I am just trying to facilitate change in order to fix a very broken system...

    Kim McCleary's testimony before the CFSAC in October 2008:

    [This Message was Edited on 12/03/2008]
  20. bjsmit1

    bjsmit1 New Member

    The following is the link to Cort Johnson'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.

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