A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Kogelnik, Friedman and Silverman on the Radio

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Aug 5, 2012.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Dr. Andy Kogelnik will be joining Kenneth Friedman, PhD, and Marly Silverman in discussion ME/CFS. Kogelnik is founder of the Open Medicine Institute. Friedman is public policy director for PANDORA. Marly Silverman is the PANDORA founder.

    The time is 7-9 p.m. EST on Sunday, Aug. 5. You will be able to listen to it live through the Internet here: http://www.blogtalkradio.com/in-short-order

    Tina
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    On air now!
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Bump!
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    20 minutes left
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    You can get immediate real time answers to your questions.
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    Very loose summary of closing comments from panel members:

    Dr. Kogelnik: Optimism is the word of the day.

    Dr. Friedman: CFS patients are probably the best educated patient population and often know better than their physicians. Stay engaged through the internet and and other avenues and support the researchers who are trying to help.

    Marly Silverman: The future is brighter with new initiatives across the board. You can help by donating to the research organizations that are studying this illness.

    New President of P.A.N.D.O.R.A. Lori (Laurie?): There is a lot of hope with all the new research and advocacy. You can also help by supporting patient organizations.

    NOTE: others who were listening please correct and add to this summary.

    Sushi
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sushi, I think cfs patient know more about cfs then most doctors because we have too as we become our own doctors because there is little they can offer so we go out there own our own to find answers. I suppose im not telling anyone here anything new but good to let others know as sometimes this knowledge we have is seen as a hypochondria but its just a lack of answers from the health systems.
     
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  8. Levi

    Levi Senior Member

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    Quote of the night by Dr. Kogelnik (maybe exact/possibly paraphrased):
    "Without a clear diagnostic marker for ME/CFS, we Dr.'s will be left scrambling . . ."
     
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  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    That first caller, Robin, I bet Marly had trouble keeping her cool and not breaking down and crying too. I hope Robin is not despondent from Marly becoming an advisor to PANDORA and the transition. The new board is structured and energized. The story of PANDORA's work is not over. There is still more work to do and others have stepped up and said they are willing to do it. I encourage everyone to support patient organizations, including Phoenix Rising. A common saying is that 20% of the people do 80% of the work. We also need to work in a way that is organized, to get more accomplished.

    In every organization there is a place for every individual as we all have talents we can share. I encourage you to find a patient organization or research foundation / non-profit and offer to help them.
     
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  11. SpecialK82

    SpecialK82 Ohio, USA

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    Thank you all that participated, it was a powerful look at where we stand today.

    The topic of suicide amoung patients was discussed, I was especially touched when Dr. Kogelnik said that he believes that many of the patients aren't clinically depressed but that they commit suicide from frustration.

    I think this is something that we in the patient community have understood for a long time, but we don't hear it from the professionals very much. He really seems to get this illness, not only physically and mentally but also emotionally.
     
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  12. Sing

    Sing Senior Member

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    I listened to this call today and appreciated its length, how informative it was, and the sense it gave of key players. I am feeling encouraged!
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Suicide, inevitably, is from a lack of hope. How bad the pain is can most often be tolerated if there is hope of relief.

    Depression can cause a person to lose hope, although their perception is distorted from the depression.
    But, sometimes, true experiences and a realistic, grounded view can make a person determine there is no hope. That is not depression, that is reality for some.

    The message here is that there is much reason for hope. Things are moving much quicker now. CDC is making changes, researchers are working together, more centers are popping up, etc. Progress is happening. We have a long way to go. But, the momentum is building.

    Also, one of the reasons for frustration is expectations not realized. Sadly, for our own mental health, we must adjust our expectations of what we expect from ourselves, people we know and the healthcare system. We must focus on what we do have, what we can do, instead of what we don't have and what we can't do.

    Many of our fellow comrades have found this place of acceptance, which reduces frustration. Rivka and her That Takes Ovaries work, despite her very severe symptoms. Laura Hillenbrand and her books. Toni, who also wrote a book. And the woman who wrote about a snail eating.

    Some do art, some encourage others through the Internet. Some analyze research.

    We should also do advocacy, but remember to not let yourself get frustrated when your advocacy efforts don't bring immediate results. It's evolution, not revolution. But the pace is quicker now.

    Tina
     
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  14. omegaman

    omegaman

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    I totally disagree with your perceptions on this. The reason things have accellerated has nothing to do with acceptance or people who are in a place of acceptance. Just the opposite actually. People like Rivka doing a one woman protest is definately not a person who has accepted things as they are.
    Laura Hillenbrand has been sick for decades and her books have not had anything to do with CFS. She on the other hand probably does come from a place of acceptance. But most people that read her books do not have some eye opening revalation about CFS. In fact if she really wanted to make an impact that would change things I think she SHOULD write a story about a person with CFS or ME. Perhaps even an autobigraphy.
    In fact what has moved things most of all was the Science paper. A paper in which the journal did not want CFS included in the title yet stubbornly and thankfully the authors refused to publish without CFS being mentioned.
    I believe that acceptance will lead to inertia and we'll all probably wind up dying with this disease. Don't accept this disease . Fight it and the inertia surrounding it I say.
     
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  15. Sing

    Sing Senior Member

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    My take on what Tina meant is not to despair but take hope that progress is happening. However, I certainly didn't take it to mean not to act, speak out and advocate for ourselves individually and collectively when and how we can best do so. I think that this has been her path, as someone with a journalistic background and skill. In this thread, we were touching on the subject of suicide from a reasoned despair at our outlook, and that is one reason why she brought forth her message of encouragement. Another, in my mind, was the lively, energetic and committed feeling I got from the researchers on this radio show. So, not either or, but both approaches in dealing with this disease. We are definitely helping each other too, as we "wait" for the answers...
     
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  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, Sing. That's what I meant. There is a fine line between getting mad enough to act, while not also getting so frustrated when that effort does not meet with immediate results that you lose hope and enter into despair.

    There is where acceptance is.

    What does the serenity prayer say? Give me the courage to change the things I can, the ability to accept the things I can't and the wisdom to know the difference.

    We can change things for our disease, but it is not immediate. And, learning to find joy and purpose in life as it is now, as Rivka and Laura have, while still being advocates for change, is where peace and contentment are.

    Laura has said she will not write about the disease because her writing is a way of escaping the suffering and limitations of her disease. In other words, she needs that escape to keep her mental health. Yet, she has used her celebrity status to speak about the disease. And as such, she had done wonders for legitimizing our illness. Could anyone look at her accomplishments and say she is a malingerer? No way.

    But, you should know, Laura's first writing, well, almost first, was an essay on the disease.

    I think we should advocate for change in our disease, but we must also fill our life with... well, life. It is for our own mental and emotional endurance to have more to our life, if at all possible.

    Again, I think the woman who wrote about the snail eating is a great example. She was greatly debilitated. And yet, she found an interest. And in studying about the snail, she came to see her own and humanity's condition in a much more enlightened way.

    Tina
     

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