Ron Davis' Plea for his Son's Life

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Ron Davis’ Plea for his Son’s Life

Ron Davis recently posted a heart-felt plea for more research “before his son, and others like him, die from this horrific disease.” He has given us permission to share his post in order to reach as many people as possible with Whitney’s story.
Here is Dr Davis’ plea:

My son Whitney woke me this morning to inform me that he is dying. Whitney has severe chronic fatigue syndrome (CFS).

He did not say he is dying – he cannot speak.
He did not write he is dying – he cannot write.

He used scrabble tiles to spell out his message. I did not answer him – he cannot tolerate anyone speaking to him. The note said he is willing to go to the hospital even though the experience will be unbearable – hospitals are totally naïve on how to treat CFS patients because of years of denying the existence of the disease. We need to surgically insert a feeding-tube into his small intestine because he cannot eat. This tells me I am running out of time.

I must find out soon what is causing the disease and how to cure it. I know I’m not the only one working on this disease but there are too few researchers, too few medical specialists, too little research funds, and too many patients. I know I, or someone, can figure this out. It requires a lot of new data and a lot of thinking. For the past 2 decades I have been involved in innovation of medical technology and automation to generate massive amounts of Human data (BIG DATA) but how do we speed up the thinking?

I spend more than half of my time thinking about this disease, comparing the limited data on CFS and many other diseases. I try to track back the symptoms to a possible molecular mechanism. The brain and gut problems could be caused by dysfunctional mitochondria (the organelle for energy generation in every cell) but what is the molecular reason for the dysfunction. Given there are over 1,600 genes involved in mitochondria this is a daunting task. I work on this 7 days a week and will continue to do so until we have an answer.

What can you do to help?

  • You can share this post with friends, family, and members of Congress to make clear how desperately and urgently we need funding of quality research to solve this disease. We will be posting plans for coordinated efforts to speak with Congress about funding issues soon.
  • You can donate to support Ron Davis’ research at OMF’s End ME/CFS Project or to the Chronic Fatigue Syndrome Research Center at Stanford University so that “maybe in the year 2016 we can find answers for all of the patients suffering in silence.”

    You can read more about Whitney’s story and Ron’s work in this Washington Post article by Miriam Tucker.

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    8 thoughts on “Ron Davis' Plea for his Son's Life”

    1. Kristen Kinsella

      I am a severely ill me/CFS patient.
      Please would you send me an email that gives me an address where I can send a small donation.
      Is it too late to participate in the Big Data Study?
      I was a participant in Dr. Montoyas and Dr. Kogelnicks clinical trial at Stanford several years ago.
      I have declined and now I am bed bound. Thank you. Please , I hope to hear from you via my email.

      1. Hi Kristen- I will send an email with information on how to contact OMF who I am certain will be very appreciative of your support. I am really sorry to hear about your decline.

        1. Hi, you can see if you can get in the study by contacting Andy Kogelnik at OMI or Linda Tannenbaum at OMF. There might be a chance since you live near OMI or Palo Alto and the patients in the study will be local to this area. However I’m not involved in selecting patients so I don’t really know. Your best chance is to contact one of them. I sure hope you feel better!

    2. Kristen Kinsella

      Beth and Janet, Thank you for your replies.
      I will send a small donation. Wish I could send a large donation.Because of ME/CFS I have been unable to work since 1998.
      Also, I will contact Dr. Kogelnick. Unfortunately, I live in Southern California.
      My thoughts are with you, Ron, Janet, and Whitney. I understand your pain.

    3. Hello!
      I have severe dysautonomy, which was first diagnosed falsely as CFS/ME.
      I was put on LDN, which caused me major crash, which I never recovered from.
      My dopamine levels went so low that my nervous system was failing, causing the basic organ systems to fail as well. My body keeps producing serious amounts of histamine, even from the slightest exercise, even mental stress is enough to do that. My body stopped working correctly.
      Last summer I was prescribed by my neurologist with Pramipexole (start with a low dose, increase slowly until the wished level has been reached) and strong antihistamines (for both H1 ja H2-receptors) Without my meds I would be dying. She saved my life.
      Many also feel better after intravenous saline drip.
      Dysautonomy causes several symptoms which are basically the same as autonomic nervous system: when it’s failing. The histamine problem is easy to measure. (if someone will do that for you)
      Take care!

    4. We need more visibility for M.E. /CFS. Please go to diseasemaps.org and place yourself on this worldwide map of people with CFS. Recommend using a pseudonym, and not putting you exact street address, but nearby school or park in your town, to keep anonymous, but show your schools, mayors, county, state, congressperson, NIH, CDS or anyone with interest that there of people with this disease in their area, and perhaps to show if we have clusters with high ME/CFS or not, like North shore Tahoe, NC, Lyndonville NY, Palo Alto area etc, or not, vs perhaps areas less affected like high deserts or Hawaii, Alaska since could at times have local environmental issues like ticks, mold, air pollution, allergens etc.
      Please go to: http://www.diseasemaps.org/en/ and list yourself under Chronic Fatigue Syndrome/ M.E. Note that two are listed in HI, one in AK, a few hundred in CA so far, so need to add 19,000,000 more people or part of this, then it will be clearer this is a global disease. If we populate well with ME, this will call more attention this this vs other diseases that are less common, but have bigger funding

    5. Annie DiPietro,R.N.

      My son Steven is suffering from what appears to be the same illness, along with Dysautonomia: Hyperadrenergic POTS. He has gone from being a healthy 27 year old, hard-working, athletic young man, to now a 33 yr old invalid, barely able to get around.
      Local MDs know little to nothing re this illness, but the drives into the “super MDs'” In Boston is torture for my son.
      This illness is cruel and unforgiving, and a nightmare for both child and parent to live with,.
      I am mother and R.N., unable to help my son.
      Annie D.

      1. Annie,
        There are some things to be done. I know that Massachusetts has an amazing local advocacy group (https://www.massmecfs.org/) and I know that Mike VanElzakker at Harvard is doing brain scans that may really be able to help shed some light on this illness. Your son may be able to participate. As a patient myself, sometimes the best feeling is that of being able to help/contribute. Here is an article about Mike: https://stgmeaction.wpengine.com/2016/12/12/dr-vanelzakker-two-new-mecfs-studies-at-harvard/.

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