The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Bedside Chats with Ben: Ron Davis

Discussion in 'Latest ME/CFS Research' started by Janet Dafoe (Rose49), Nov 9, 2017.

  1. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I'm so happy to post the first in our new series "Bedside Chats with Ben". I have long wanted to get more science from lots of different scientists on PR, and help patients have more contact with them.

    The idea of this series is for Ben to have informal chats with various ME/CFS scientists and doctors so that patients can feel more connected to the research and get updates more often. It's intended to give you a more informal look into the research, the researchers, and the process.

    I will be contacting various scientists and doctors and connecting them with Ben to set up a time for their chat. Lucinda Bateman has already agreed to do the next one!

    Ben is bedridden and is pretty sick, so he will do this at a pace that works for him. He needs to be lying down in his bed, so he's set up his large monitor with Skype and some software to record it. We will post the chats on the OMF YouTube page in a playlist that will contain the whole series.

    We apologize for the crackly sound on Ron's recording and we will work to figure out what caused it and fix it. I think it's still quite easy to understand in spite of the crackles.

    I hope you enjoy this first chat, and the whole series.I hope lots of scientists and doctors agree to chat with Ben. I'm trying to decide who to call after Cindy Bateman. :)

    Please give us feedback. I will attempt to get Ron to answer questions that will be posted on this thread, but there might be too many for us to handle. I promise I will do my best.

    Enjoy!

    Janet


     
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  2. tinacarroll27

    tinacarroll27 Senior Member

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    Thank you for this. This is great. :)
     
    AdamS, bspg, Mel9 and 9 others like this.
  3. concepcion

    concepcion Senior Member

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    Thanks so much Janet. Is this a PR show?
     
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  4. Nickster

    Nickster Senior Member

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    This interview series is a great idea! We (the sick/caretakers) get to be connected with our great medical community to keep us informed on discovering a cure for this disease.

    Janet I am so glad that you put this together. Thank you!

    Ron's interview was a great window into his daily work which includes frustrations and finding solutions to those frustrations. I had no idea that these issues happen on a daily basis. It makes me feel as if we are all working as a team (even though your doing all the work). Grateful for all your hard work!

    We need to be a more positive society and encourage. Negativity and trolls suck.

    Ben you have a jovial English accent. Now when I see your writing I will hear that jovial accent.

    Love this!
     
    Last edited: Nov 9, 2017
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  5. Ben H

    Ben H OMF Correspondent

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    Yup, the fustrations are part of the scientific process for sure @Nickster :)

    Jovial! Haha. Thanks!

    On a serious note it was a real honour to be able to talk with Prof. Davis like this, truly one of a kind.

    I'd also like to thank Janet and @AshleyHalcyoneH for their hard work on this too!


    B
     
    Last edited: Nov 9, 2017
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  6. Plum

    Plum Senior Member

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  7. Silencio

    Silencio Senior Member

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    Wonderful.. this is the best.. talking casually about day to day stuff. I love it, thank you.
     
    Jill, Nickster, bspg and 14 others like this.
  8. Jesse2233

    Jesse2233 Senior Member

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    This is great!!!!
     
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  9. Countrygirl

    Countrygirl Senior Member

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    WoW! Brilliant Janet and Ben!

    Thank you so much for this!
    :hug::thumbsup:
     
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  10. Joh

    Joh Inactivist

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  11. Diwi9

    Diwi9 Senior Member

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    Loaded with information...wow...thank you!
     
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  12. AdamS

    AdamS Senior Member

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    This is a brilliant idea, things like this really keep me going when i’m struggling. Thanks to all who are involved in making it happen and especially Ron for continually engaging with the patient community. Awesome!
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    Great idea--huge thanks to all involved--Dr. Ron Davis, @Ben H, @Janet Dafoe (Rose49), @AshleyHalcyoneH and anyone else involved. This is exactly what we need to keep our spirits up--actual information about the research and projects in the works that may lead to knowledge and healing. :thumbsup:

    The heads-up on Suramin is certainly a needed caution as many are exploring possible sources of this drug. Learning that the version that may be on the market here and there, could have contaminants is very important.

    Great that Dr. Bateman has agreed to participate in this series of informal interviews. Please keep them coming!
     
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  14. Learner1

    Learner1 Professional Patient

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    Thanks, Ben and Ron! It's very helpful to understand your think8ng and the challenges you're dealing with!

    Keep the info coming!
     
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  15. PinkPanda

    PinkPanda Senior Member

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    That's an awesome idea!:D And thankyou to everyone who is putting their energy into this!
     
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  16. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    It's feedback.

    Use earphones and turn the speakers off. ;)
     
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  17. perrier

    perrier Senior Member

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    I'm glad to see that Dr. Davis looks good. And Ben is as handsome and charismatic as ever! Thank you.
     
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  18. neweimear

    neweimear Senior Member

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    I was so thrilled to hear that clinical trials may be happening soon. There are days I feel like I am dying, im sure I am not alone in that feeling. If there were just some drugs we could try that could help us, that would be so fantastic. We can keep working toward the cure but God if life could be a little easier, it would mean so much. Thank you all so much. The prospect of some relief brings tears to my eyes.
     
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  19. Jesse2233

    Jesse2233 Senior Member

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    Some thoughts while watching this...

    - Can Ron validate the CellTrend / Scheibenbogen / Bergquist results using existing severely ill samples?

    And perhaps add the Cunningham Panel? If those ABs hold up then that could be a strong diagnostic marker for a subset

    - Does the impedience assay give off a stronger result when patients are in PEM?

    Might it be tested with Drs Bonilla, Montoya, Kaufman, Chheda, Kolgelnik or another local doctor's patients?

    Anyway to get one to Fluge / Mella to test on their RTX / CTX responders?
     
    merylg, Nickster, Binkie4 and 13 others like this.
  20. aquariusgirl

    aquariusgirl Senior Member

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    I wanna know what the girl on loads of drugs is on?! Like I want what she's having to quote when harry met sally
     
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