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A plea from Ronald Davis for more research, and donations.

Discussion in 'General ME/CFS News' started by Marky90, Dec 30, 2015.

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    "A plea from Dr. Ronald Davis for more research funding before his son, and others like him, die from this horrific disease. Please donate today, before the year ends, so that maybe in the year 2016 we can find answers for all of the patients suffering in silence. 12466293_973567226048400_2310538746211662629_o.jpg

    "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." -Dr. Ronald w. Davis

    Donate here: http://cfsresearchcenter.org/index.php?option=com_k2&view=item&layout=item&id=72&Itemid=723"

    So heartbreaking, Whitney`s situation.
     
  2. ahmo

    ahmo Senior Member

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    My first thought was that I'd just given my donations. And then recognized that every click, every $ demonstrates support for Whitney, for Ron, and for research. Thanks Marky.
     
    rosie26, rosieness, Marky90 and 2 others like this.
  3. Timaca

    Timaca Senior Member

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    I am very sorry to hear this. Where did you find this information @Marky90 ? I hope to make a donation to his organization and the Stanford CFS organization before the year ends.

    Are these two researchers (Dr. Montoya and Dr. Davis) working on different areas of CFS? Is that why there are 2 separate websites?

    All the best to everyone, especially Dr. Davis's son.
     
    rosie26 and Mel9 like this.
  4. Sushi

    Sushi Senior Member Albuquerque

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    Marky90 likes this.
  5. Timaca

    Timaca Senior Member

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    Thanks!
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    The info is also in an e-mail if you receive the OMF or the End ME/CFS Project update e-mails. I rarely ever look at their FB page so that is an alternate way to get the updates.

    @Timaca To answer your question, yes they are both separate and connected (Stanford and OMF.) If you donate to the End ME/CFS Project which is part of OMF/NIDA then you are donating to Ron Davis' research. The link should explain it and if you donate to OMF you can mark the check to go to the End ME/CFS Project specifically.
     
    Marky90 likes this.
  7. JAH

    JAH Senior Member

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    Every media story should use this photo to illustrate CFS.

    Heartbreakbreaking. Powerful.

    My heart goes out to him and his family,
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    At the moment this has 363 Shares on FB. I'd encourage PR members who have FB accounts to share it as this is likely to bring more donations.
     
    rosie26, Never Give Up, JAH and 2 others like this.
  9. Denise

    Denise Senior Member

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    I am in no way social media savvy so my please forgive me if my suggestion is not feasible.

    Is there a way to comment on this on the Washington Post Facebook or Twitter accounts (linking to the article the Washington Post had in October) as a way to possibly get even more contributions?
    And possibly do the same with the FB, etc accounts of the Palo Alto online magazine that had articles about Whitney and family?
     
    Sushi likes this.
  10. geraldt52

    geraldt52 Senior Member

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    Meanwhile, the CDC will spend 2016, and presumably a big chunk of their $5M budget on CFS, on travelling and meeting and talking and shuffling paper about creating educational materials and awareness...after 30 years, mind you. I wonder if it has ever occurred to them that if they funded research to solve CFS that education and awareness would take care of itself.

    I understand how bad the optics were for the CDC CFS budget being cut to zero, but that was exactly the amount they should be entrusted with. Kudos to anybody who can bring themselves to participate and represent PR in the CDC's upcoming dog and pony show. I couldn't for fear of being provoked into spitting in someone's face...
     
    jimells, RL_sparky and halcyon like this.
  11. ballard

    ballard Senior Member

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  12. JAH

    JAH Senior Member

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    I found out about this story through twitter. The OMI and Ryan Prior tweeted it out. You can search for tweets using the hashtag #RonDavis. I have no energy, but if anyone has the energy, you can send the Facebook links to @washingtonpost, or @nytscience, or anyone else you can think of. You can like and retweet the OMI or any other tweets (I don't really have any followers, so kind of pointless for me to retweet, but maybe PR could do it)

    J
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    After giving my info I came to a red MAKE A PAYMENT button. That worked.
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    Maybe @Bob could do this.
     
  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    As others have said this is so sad, but unfortunately it's not unheard of around the world that patients get infected and these children/young people grow up, grow old and wither away because no one in the government cares about 'CFS' believing it to be a syndrome of Chronic Fatigue, not a living death.

    Why did the American's decide to place everyone from bedridden tube fed ME into the same camp as someone with chronic fatigue and four symptoms, aka CFS?. Wasn't that incredibly dangerous and reckless thing to do medically? Well the CDC didn't care and went ahead and made the Chronic Fatigue Syndrome anyway, the label that Whitney is now held hostage by.

    If CBT/GET is not an appropriate therapy for Mr Davis's terribly ill son, then this means there is no therapy to stop patients becoming desperately ill. This means patients are in grave danger, if they become severely affected, or very severely affected.

    So the question is, why is there no treatment? Because there is no appropriate level of biomedical research funding in 2015 just as there wasn't in 1988. The government won't fund it, as they don't believe CFS warrants any funding along the same levels of AIDS, despite CFS perhaps affecting 10x or more, in terms of numbers than who now have HIV in the US.

    So the people responsible now, legally, for the peril Mr Davis's son is in, isn't a person, it's system (a system run by people). The American government health system, who won't fund appropriate levels of biomedical research.

    I hope Whitney will be OK, but as a last hope, letters need to be written (if possible) by Mr Davis to the people who placed his son in the situation he is on now, and their replies made public. People need to be held accountable for making 'decisions' over CFS as ME and not creating subgroups decades ago. When you work in the health care system when you ignore the recommendations of the CFSAC (for example), then people don't forget.

    The CDC's Fukuda Criteria were always hopeless, and sadly, it's the patients and their families who pay the price.

    What a terrible situation.
     
    Last edited: Dec 30, 2015
    Marky90, Ellkaye, Gingergrrl and 4 others like this.
  16. Jill

    Jill Senior Member

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    I have a partner who is a severe patient. He's been going downhill for 15 years. He can still eat thankfully but everything else is living hell ( pain, fatigue ( but that doesn't describe it) etc). We ended up in hospital in Auckland this year and it was appauling. I had to get my dear brother to get him out and I discharged him. We asked our so called ME doctor to come and witness the so called medical care he was getting - she wouldn't even bother. How can I support a NZ's national orgn when the dr the send to conferences cant be arsed with the severe?

    I cry reading about Ron, Janet, Whitney and whitneys sister. I too fear for my partners life. People do die and that is not what is recognised. Too many people in NZ are diagnosed with ME and they don't have it! It drives me crazy.

    I thank Whitney and his Dad for being so open in their plight and getting us the correct publicity we need.
    xxxxxxxxx
     
    Ellkaye, BurnA, Gingergrrl and 8 others like this.
  17. Yogi

    Yogi Senior Member

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    Very terrible and sad situation.

    Silver lining is it is fortunate that Whitney and we all have Dr Davis and Stanford now moving quickly with biomedical ME research and fighting for the truth against the PACE trial.

    OMF and Stanford have been lucky recently $500k from wealthy donors (thank you anonymous donors!) and the small amounts the average sick person here cannot compare.

    However I think we should all try to give something as a donation however small. Even an amount of $10 would show our support and solidarity to the Davis family. Combined if we all donated - all of this would make a huge sum indeed!
     
    geraldt52, Bob, BurnA and 4 others like this.
  18. gregh286

    gregh286 Senior Member

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    That is heartwrenching for dr.davis.
    To be involved in the medical profession and your colleagues are in denial of a disease that your son is dying in front of you.
    Its so brutal its unreal....meanwhile western governments continue to send financial aid abroad....harbour refugees...and lots of other.political bullshit when they're own people are suffering like this.
    Its bloody obscene.
     
    Last edited: Jan 1, 2016
    Ellkaye likes this.
  19. Gingergrrl

    Gingergrrl Senior Member

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    I wasn't sure if you knew, it is his son, and not his sibling (although both would be heartbreaking!)
     
  20. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Son...sorry. yea both soul destroying. Cheers.
     

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