Ron Davis Talks on ME/CFS...and Texas Listens

Discussion in 'ME/CFS and FM News' started by Cort, Jan 27, 2018.

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  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Making a Difference


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    Ron Davis was invited to the University of Texas to talk to the biological and bioengineering departments over two days. His long talk was putatively on developing affordable technologies that can be used by doctors, but it ended up being more than that. On the technology side, though, Davis has always been focused on making a difference.​

    His Stanford Genome Technology Center's main focus is to develop new and affordable technologies that can make a difference in the doctor's office. That's what the nano-needle - a potentially very cheap diagnostic device - is all about. From SGTC's web page


    The Biotechnology (err ME/CFS) Talk

    Davis, of course, has done innumerable talks but probably none more important to him than the ones he's doing now on ME/CFS. Because several of Davis's biotechnologies (nanoneedle, magnetic levitation device, HLA analytics) are being used in chronic fatigue syndrome (ME/CFS), Davis used the opportunity to spread the word on ME/CFS. He then went into the biological and bioengineering departments over two days doing the same thing.

    Janet Dafoe reported that Ron came back from his two-day visit surprised and gratified at the response.

    Talks at Universities usually end with a couple of people milling around for 5 or 10 minutes afterwards but Janet reported that hundreds of people remained for up to an hour after Ron's talk. They were interested in ME/CFS and shocked they'd never heard of a disease that was a) so prevalent and b) could be so disabling.

    (One researcher told the group that a top official at one of major hospitals there told him he had never heard of the disease.)

    Long Time Enroller

    The response is actually not all that surprising. Ron is and apparently always has been very good at enrolling people in the subjects he finds fascinating. Check out how a talk of his 43 years ago (!) changed one grad students life:


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    Let's hope some others come away inspired to change their career path and work on ME/CFS. At the very least new "listening" around ME/CFS in the biology and biotechnology departments at the University of Texas.

    We're lucky to have a couple of people like Ron Davis and Ian Lipkin who can pack a room and whom people will listen to. Every time someone shares authentically about ME/CFS they move the needle forward a bit. Somebody's share with a San Jose State biotechnologist launched potentially groundbreaking research into problems with capillary blood flows in ME/CFS. (Each of Davis's precious ME/CFS samples is now being assessed by the nano-needle, the magnetic levitation device and SJSU's capillary tests)

    NIH Director Francis Collins moved the needle when he recently emphasized how serious ME/CFS is in a Medscape interview.
    Unrest is moving the needle. Jen Brea's Ted Talk is doing the same. So is Valerie Free's Lighting Up a Hidden World. So are the interviews we're seeing in the media. Every time someone shares authentically about ME/CFS we make some progress.
    My new wish for 2018: Ron Davis finds a way to do a talking tour of the major Universities in the U.S....
     
    Last edited: Jan 28, 2018
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  2. Hello!

    Hello! Well-Known Member

    Go Ron!
     
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I say find a way to do a talking tour of the major Universities. I want to see Ron (and Tony Komaroff) at Harvard!
     
    Last edited: Jan 27, 2018
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  4. murph

    murph New Member

    I am so Excited over this. This is the first time I have had hope for a treatment or cure for soo long. Looks like things are starting to come together. I've had this illness for 26 years and am amazed there are still doctors and researchers etc.. who say they have never heard of this. AWARENESS....FINALLY!
    Thank you for Sharing Cort. Made my day!
     
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  5. GG

    GG Well-Known Member

    Sounds hopeful, but would think researchers at Universities already have grants to finish up, so perhaps another year or 2 before they enter our realm, and longer to get some results. I can hang in there for that, just hope others are able to deal with this crap illness for a while longer :)

    GG
     
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  6. Abrin

    Abrin Well-Known Member

    Me too!

    I hate to admit it out loud but I have found myself to be actually giddy with hope lately. I mean, I totally get that it could take another decade or more to come close to anything that looks like real working treatment.

    But even the fact that I can explain to people that no, in fact science has proven that it isn't 'just in my head' and there is more and more data every day to prove that this isn't something psychological in itself feels like an amazing gift. :)
     
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  7. keepinghopealive

    keepinghopealive Active Member

    This might be the most depressing comment I've read in a while.

    I'm sorry but I do not have "another decade or more" to wait for "anything that looks like real working treatment".
     
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  8. Abrin

    Abrin Well-Known Member

    I didn't mean to be depressing!

    I apologize, I am over-tired today so I am not communicating well. I get your feels. I have been sick since I was around 7 years old and I am in my mid-forties now.

    Unlike many others I don't even have a memory of a time in my life that I wasn't sick because I've always had symptoms even though they have gone up and down in severity through the years.

    I sometimes don't understand how depressing it is for those who had a least a couple decades of life under their belt before they became sick. As silly as it is to say, in my more depressed moments I have even envied those who ever got to live their life at all. It is embarrassing to even admit to it.

    By a real working treatment, I meant some sort of magic bullet that would work for all auto immune diseases that share the same problem-set.

    So much amazing progress is being made right now that won't just be changing the lives of ME/CFS patients but will also be changing what we know about modern medicine in general.

    The fact that we understand know that the problem seems to be coming from the serum and not the cells themselves is mind-blowing.

    The fact that they are treating people with MS with cancer drugs would be considered sheer quackery just thirty years ago.

    In summary, I feel you. I understand what it is like to long for a normal life since I've longed for one almost as long as I've been alive. My father has ME/CFS too so I grew up seeing it completely destroy his life and I tried to hide my own illness from him because I knew it would break him to know it was possible that I genetically inherited it. In my 30s I just eventually got to the point where I assumed that I would just live and die being told it was all in my head like my father was. Sorry if my over-excitement for that ended up depressing you. I would take the post back if I could. :(
     
    Last edited: Jan 27, 2018
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  9. Janet Dafoe

    Janet Dafoe Active Member

    There were 300 scientists at that talk and not a single one of them left for the entire hour of questions. And all the questions were about ME CFS and how could it be possible that such a serious disease has been neglected and nobody understands it.
     
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  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Good....You never know what might come of talks like these. I hope Davis can keep giving them.
     
  11. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I honestly do NOT think you will have to. I think its less likely that we'll have a new drug for ME/CFS (but hold on for a blog coming up shortly - it's actually possible) but I would be surprised if already available drugs that are not currently being used in ME/CFS which relieve symptoms and improve functionality - don't come available..
     
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Remarkable!

    Isn't there a way to help Ron get invited for some more talks? I wish he would just win the Nobel Prize and then everyone would invite him! :)
     
  13. Perrier

    Perrier New Member

    Thanks. Folks are all saying this. Dr. K de Meirleir told a patient that in this year there would be a treatment. Dr. Chia told a patient there was a treatment coming soon. Of course, I'm just repeating what folks posted. But I sure hope this is not just dangling a dream in front of us. Some folks are close or have come to a breaking point, and can no longer sustain the symptoms of this illness. They need help now. Please update if possible. Thanks.
     
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  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks for passing that on Perrier. Davis has also said he hopes to do some small treatment trials this year. I'm really interested in what Chia has up his sleeve - he seems like a very creative doctor.
     
  15. Perrier

    Perrier New Member

    A patient of his posted this news, but did not say what he intend to have. Another patient posted that it might a relatively new cancer therapy which will address T cells. But this is all vaguely and I wish we all had more facts.
     
  16. mymichelina

    mymichelina Member

    I am so thrilled to see more recognition and information coming out now! Dr Davis is fantastic!
     
  17. Judi

    Judi Member

    Ron Davis could move that needle up more with talks at universities across the country. Hope it’s on his agenda.
    I’m reading Valerie Free’s book “Lighting up a hidden world” which is outstanding! Her writing is beautiful. Reading her story is like reading my story (glad she wrote it because I can not write). Her compassion resonated with me and what a wonderful feeling that is! I believe it would lessen our suffering if we had compassion from our doctors, our families and friends. Telling our stories and scientists working to find out how this disease works will keep the needle moving up.
    Cort, I was inspired to buy her book after reading an article you wrote. Thank you!
     
  18. Not dead yet!

    Not dead yet! Well-Known Member

    Great news! I got a chill at the part where the hospital exec hadn't heard of it.

    I went to a minute clinic (CVS) and mentioned the Unrest video to the young doctor there. She seemed very interested. By contrast, I can't get my (elderly) MD to watch it. I'm offended enough by that to consider switching to Duke Integrative. Depends. I'll have to get to know one of the doctors first.
     
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