Please thank Dr. Friedman, a very brave man for his CFSAC testimony

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by misskoji, Nov 11, 2009.

  1. misskoji

    misskoji Moderator

    This man deserves so much more than thanks for his plight to help us. He's possibly lost his job for speaking on behalf of us.

    You can send him an email here
    kfriedman@pandoranet.info

    I sent him off one this morning. Please take a moment to thank our HEROS!

    You can find his testimony here
    http://www.youtube.com/watch?v=4p6kcBdSsAc&feature=player_embedded
  2. frenchtulip

    frenchtulip Member

    I will send a thank you note. Thank you for posting the email address.

    For years I have wondered what we could do to get CFS in the medical school curriculum. Dr. Friedman outlined what needs to happen so that medical schools will include CFS. I will definitely keep his information in mind when I prepare my recommendations for the next CFSAC meeting.
  3. illroy

    illroy Member

    thanks, I've been thinking about this. Here is a transcript of his testimony.

    Chronic Fatigue Syndrome Education in the United States
    Testimony for the Chronic Fatigue Syndrome Advisory Committee

    October 30, 2009 Chronic Fatigue Syndrome Education in the United States
    Testimony for the Chronic Fatigue Syndrome Advisory Committee
    October 30, 2009
    Kenneth J. Friedman, Ph.D.
    Treasurer of the International Association of Chronic Fatigue Syndrome/ME
    Director of Public Policy for P.A.N.D.O.R.A., Inc.
    Scientific Adviser to Lifelyme, Inc.
    Board Member and Chair of the Medical Student Scholarship Committee, New Jersey
    Chronic Fatigue Syndrome Association
    Board Member, Vermont CFIDS Association


    Good morning!

    My name is Kenneth Friedman and I am a medical school professor.

    I have been asked by the IACFS/ME to comment upon the status of Chronic Fatigue Syndrome education in the United States.

    Comments on The Academic, Medical School Environment

    The Director of the Office of Ethics and Compliance of my employer has informed me that my off-campus activities related to CFS which include: testifying before this Committee, serving on this Committee, providing continuing medical education courses, establishing medical student scholarships and assisting with healthcare legislation are not part of my responsibilities as a University Professor. I am told that I will be punished with a penalty as severe as termination of my employment for these activities.

    I am not a unique target. Colleague Ben Natelson has left the same school. A different medical school has refused to permit access to their medical students to discuss CFS or inform them of a medical student scholarship. A statewide health care provider, with no physician capable of managing CFS patients refuses to permit a CFS training session for their physicians. The failure of the CDC to convince the medical-academic establishment of the legitimacy of CFS, and the urgent need for its treatment, has created this environment.

    Comments on Medical Student Education

    High ranking officials of medical education have testified before this Committee that they are powerless to control the curriculum of medical schools, and cannot mandate the inclusion of Chronic Fatigue Syndrome in the medical school curriculum.

    Were the CDC to mandate the reporting of CFS to the Federal Government, as it does for other illnesses, the National Board of Medical Examiners would have no choice but to put CFS questions on the National Boards. If CFS questions were to appear on National Board licensure examinations, medical schools would have no choice but to include CFS in their curriculum.

    I have appeared before this body on two separate occasions arguing for the use of existing student programs within both the NIH and the CDC to rotate medical students through NIH and CDC laboratories. I have pleaded for dialogue and feedback on any of my proposals. I have heard nothing.

    The only mechanism for medical student education for CFS is the medical student scholarship programs run by patient advocate organizations. We now have programs running in three states. How many scholarship programs must be mounted by state patient advocate groups before the CDC mounts a single, national medical student program?

    Comments on Continuing Medical Education for Physicians

    To my knowledge, the CDC's on-line continuing medical education CFS course is the only involvement of the federal government in healthcare provider education. Does the CDC honestly believe that sitting in front of a computer screen for a few hours will make a physician capable of diagnosing and treating CFS?

    From the CFS Community's perspective, what is the impact of the on-line course on diagnosis and treatment of CFS? From Vermont CFIDS: there is no increase in the number of physicians who diagnose or treat CFS in this state. From NJCFSA: the number of requests for physician referrals to our helpline has not diminished.

    Comments on Chronic Fatigue Syndrome Educational Materials

    In my opinion, all federal and private sector literature concerning Chronic Fatigue Syndrome is out of date. There is no established mechanism for updating health care provider literature. Of the available literature, the most authoritative and accepted source of information on Chronic Fatigue Syndrome is a physician's diagnosis and treatment manual not produced by the Centers for Disease Control, not produced by the National Institutes of Health, but produced by the New Jersey Chronic Fatigue Syndrome Association: the Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. I ask that this Committee recommend to the U.S. Secretary of Health that a national diagnosis and treatment manual for CFS be created, that a panel be formed to write this manual, that the Department of Health and Human Services underwrite the expense of producing and distributing this manual.

    With regard to the recent Spark Awareness Campaign and the
    accompanying Physicians Toolkit, not one patient in the State of Vermont ever saw the patientï pamphlet. An incredible waste of money!

    Conclusions

    The only on-going educational programs for medical students and physicians that involve human contact come from patient advocate groups.

    Patient advocate groups are the current source of educational materials for CFS. They rely on the assistance of academicians. If academicians are threatened with termination of employment for participating in Chronic Fatigue Syndromeeducation, there will be no educational programs.

    I beg you to consider the magnitude of this problem.

    I beg you to undertake a course of remedial action.

    Thank-you!


  4. simonedb

    simonedb Member

    thats wonderful, I didnt know about this man. So why is he so dedicated?!
    I just posted on the ampligen stock thread as well that these 2 threads seem related, I don't understand all the obstacles to cfs identification and treatment, very curious!!
  5. denis321

    denis321 New Member

    Dr. Friedman's daughter has had CFS since her freshman year in college. (This is publicly known.)
  6. AuntTammie

    AuntTammie New Member

    I will definitely have to write and thank him for being willing to risk so much to get the word out. I wish that all Drs were required to read this (in addition to obviously being better educated re CFS in the first place)
  7. Khalyal

    Khalyal New Member

    I emailed him and got a very nice letter back. He says to rest assured that no matter what happens to his job, he will continue to fight for us.

    Please show him some support!

    Thanks
    Khaly
  8. AuntTammie

    AuntTammie New Member

    I sent him an email and got a very quick and very nice response back....if only there were more people like him out there.....but at least there are some & I am so thankful for him
  9. frenchtulip

    frenchtulip Member

  10. nah.stacey

    nah.stacey Member

    I first went and watched the CFSAC portion that Dr. Freidman presented to the committee and was saddened by what he was dictated by his employer NOT to participate in. I thought we lived in a FREE country where we can spend our free time as we wish, and participate in something that used to be called "Freedom of Speech". What have we become.

    I also thanked him for having the courage to knowingly putting himself in a position where he might lose his career. He may lose it by choice where we have lost our careers and more NOT by choice.

    Yes, he was just one voice but add that one to the others and maybe we will be heard and understood.

    Bless his soul.
  11. utah30

    utah30 New Member

    Thank you misskoji for the email - email is about all I can do activism wise - so thank you for making it easier - because I want to help - and I want to thank those who give us a voice! He is a courageous and wonderful man to speak out at risk to his own well-being. I sent an email - thank you for making it easy for me to do that (except for the forming proper sentences part) but I'm sure he'll understand :)

    Yes I think it's important to support our supporters - many of us suffer in silence or are silenced and they are our voices.

    Thanks again - best to all,
    Utah30
  12. jasminetee

    jasminetee Member

    Thanks all for contributing to this thread. I wrote Dr. Friedman a thank you in the Contact Us at Pandora, is that the right place?

    tee
  13. mbofov

    mbofov Member

    and all the information from the posters here - I just e-mailed Dr. Friedman too -

    Mary
  14. elliespad

    elliespad Member

  15. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I was wanting to find the youtube of his testimony to show my husband. I knew I had seen it, but couldn't find it again. Thanks for posting. I'll show it to my husband this evening.

    I have been reading Osler's Web and every once in a while I will read some to him. So he is getting little tidbits of information to understand why patients are upset with CDC.

    I will say, as a professor, the university has some authority over what you do or say outside the classroom because it reflects on the credibility of the instruction he gives in the classroom.

    For example, if you had a science professor telling news reporters there is evidence the earth is flat, then you might lose your job.

    I read of one professor of microbiology a few years ago who was going to give a speech on the possibility of intelligent design by looking at the single cell. There were many complaints and he was told if he gave the speech he would lose his job.

    You would think the colleges is where critical / independent thinking is taught. I guess it is, as long as you come to the approved conclusion.

    It seems that instead of opening minds, colleges take young people with a slightly closed mind and replaces it with a very closed mind with their beliefs.

    I appreciate Dr. Friedman's work. Although it is not just for us. He has a personal interest, his daughter.

    But, there are some true heroes among us.

    Dr. Peterson is number one (in the U.S.) He has no personal gain. He has lost a whole lot taking up our cause, including his reputation and money. And let's not forget his wife also made sacrifices for us.

    Second is Paul Cheney, then Dr. Anthony Komaroff and Dr. Nancy Klimas. All of these individuals took a stand for no other reason than that they care about their patients' suffering. And these doctors took personal sacrifices for that. A reputation is a big deal in the doctor world. And they set that aside to do what they know to be best.

    They are heroes.

    Dr. Bates is also to be greatly admired, although she had personal reasons to make the sacrifices, her sister had CFS.

    Anne Whittemore and Dr. Mikovitz.
    And I have always appreciated Kim McCleary, who doesn't have any family members with CFS, yet she has taken up our cause. Now this is different, she is paid for this and she had no professional reputation or money to lose from doing this work.

    Tina

  16. frenchtulip

    frenchtulip Member

  17. misskoji

    misskoji Moderator

    Thanks again for writing to Dr. Friedman. I feel it's very important to thank and show support of anyone who takes up this cause so they know it's validated and appreciated. It's also important to continue that support in the future.

    Tina, I agree with you about the others you mentioned being heroes. And although some of our heroes do have a vested interest if you will, they don't have to be public about it. Who knows how many don't speak out about it and hide it in fear of stigmatism, jobs, ect. I sitll consider it heroic. Among a few others who deserve recognition are Rich VonK, Dr. Donnica, Cort and all others who speak and work for us.
  18. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Good point, especially if they have something to lose.

    Some have everything to lose and nothing to gain.

    Some have something to gain but also can lose other things.

    We need them all and appreciate them all. It takes a village and it takes leaders and considering the circumstances, it takes some heroes.

    Tina
  19. denis321

    denis321 New Member

    Kim McCleary worked for the CFIDS Association beforehand but she is married to a man whose mother and sister both have CFS.

  20. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I remembered that her sister suffered from migraines. I think it was her sister. So that created her interest in chronic illness.

    Now, I would love to hear the story of how she met this man.

    I am sure it is through her work.