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ME/CFS at the National Press Club in Washington, D.C.

Discussion in 'Upcoming ME/CFS Events' started by RyanPrior, Jan 19, 2014.

  1. Wally

    Wally Senior Member

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    "Comfort the Patients, Educate the Doctors, Shame the Government" into recognizing and helping this devastating illness. Go Llewelyn!

    Dr. Kogelnik speaking . . .
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  2. Ember

    Ember Senior Member

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    Last edited: Jan 25, 2014
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  3. Firestormm

    Firestormm Guest

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    Cornwall England
    So do we know how it all went? How many reporters turned up? Or if this will be covered in any national press? Thanks :)
  4. Wally

    Wally Senior Member

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    Not sure if @Ryan Prior is available right now. He was going to be traveling back to his home base from D.C.

    I did attend the press conference (as did several other patients) and there was national press at the event and questions were asked (including requests for contact information). :angel: I also was aware of a number of other interviews for this group that had been set up before and after this Press Conference.

    It was my observation that Llewllyn King, Dr. Kogelnik and Ryan Prior were very, very busy in Washington D.C. and in my opinion they did a fantastic job at the Press Conference. Extra thanks go out to Dr. Kogelnik who made the trip from California sporting a snazzy pair of crutches as a result of suffering a broken leg. Wishing him a speedy recovery. :balloons:

    As to your question about whether this event is going to be picked up or has been picked up by the National Press, I think Ryan will have to answer those questions because I don't know. I have been sequestered in my hotel room since Friday evening working away on preparations for events happening next week in D.C. - i.e. demonstrations, IOM meeting and lobbying Congress. There are many patients and patient advocates working quietly and diligently behind the scenes. If other patients and/or their supporters would like to lend a helping hand to keep the ball rolling to try to get this illness a spot front and center on the national news stage (and hopefully international stage) your support would be very welcome and appreciated. Full instructions on how you can help in this effort will be published tomorrow on this and other MECFS Forums, Websites and Facebook pages.

    Sure hoping everyone will be as rested up (as possible) because Monday is going to be a very busy day. ;)

    Wally
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  5. Wally

    Wally Senior Member

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    Whoops! Wally forgot to include today's musical entertainment for all you canaries who are getting ready to step up to let the world know that you're coming out to be heard. Enjoy!

    Last edited: Jan 26, 2014
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  6. searcher

    searcher

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    I am not sure if this was posted already, but you can see the recording on YouTube now. I thought there were several good questions and informative answers from Dr Kogelnik, Ryan Prior, and Llewellyn King. I thought it was particularly interesting that Dr Kogelnik talked about the potential links between ME/CFS and autism, and Llewellyn King talked about patients moving to the desert to avoid mold.
    Last edited: Feb 1, 2014
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  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This YouTube video is very hard to hear at times, but it well worth watching. Something I would like to know more about is a bit short of 40 minutes in Kogelnik discusses clusters, and Ross RIver virus clusters in Australia that are still happening. The implication is they are simply not be reported the way old cluster outbreaks were, but it is not clear about the size, distribution or frequency of such outbreaks.

    I used to live on the Ross River.
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  8. Tuha

    Tuha Senior Member

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    you mention Kogelnik´s talk about the potential links between ME/ CFS and autism. Yeasterday I got my results for opioid peptides/ opiates and it was positive. My doctor explained me that my body is probably incapable to metabolize gluten and casein what can lead to the overproduction of opiates. He told me that this is really common in autism. He also said that it´s not yet scientificaly validated but many autistic children showed improvement after casein and gluten free diet - so maybe there is a relationship between these opioid peptides and autism. I already knew that i have casein and gluten intolerance but my test for celiac (stomach biopsie) was negative. I already follow for a longer time casein and gluten free diet (not 100 % strict - maybe 80% strict) and it definitely helped me to improve my health. I find it interesting that there are similarities between ME and autism. But what to think about all of this?
    NK17 likes this.
  9. Wally

    Wally Senior Member

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    @Tuha - I am really behind in reading posts on the Forum, but I am slowly trying to catch up. I saw your post and I thought you might be interested in watching Dr. Lipkin's June 2011 talk at the Univ. of Nevada (WPI) about pathogens. At this talk, he discussed how a pathogen (i.e. viruses) can effect people differently based on their age and even if they are male or female. I found Dr. Lipkin's talk to be really fascinating and I believe what Dr. Kogelnik was saying at the Press Conference would follow along these lines as well. Another idea that I have seen discussed online is whether an illness like MS could be caused by a pathogen that is also involved in ME/CFS, but perhaps the difference being where it ends up doing its damage and/or hanging out.

    Here is the link to Dr. Lipkin's talk at the Univ. of Nevada in June 2011. http://imedia.unr.edu/unsom/whittemore_peterson_institute/dr_ian_lipkin.html
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