Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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OMF progress

Discussion in 'Active Clinical Studies' started by neweimear, Oct 25, 2017.

  1. Kati

    Kati Patient in training

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    @Janet Dafoe (Rose49) thank you so much for the snippets of what life is like at Stanford. Every snippet is important to maintain hope. Science and funding process is so slow. There seems to be no sense of,urgency unless you are either a patient or a family member- but there are a few exceptions to this. That is so frustrating. I keep on hoping that physicians and health care professionals i have contact with could understand what is happening in my body and what it feels like, but they do not have the slightest interest.


    I had a 4th surgery to my ankle as of late and things didn’t really go well att he hospital, i had to stay 3 night, in a room with 3 other patients, always one who could not stop talkimg loudly with the call bells ringing non stop amd seemingly no one answering them. There were horrible pain issues and the doctors that came to visit could not even ask me questions about my condition, they simply read in my chart and who knows the kind of informtion that is written in my chart. I was over-sedated and people kept poking me seemingly every 5 minutes just to remember to breathe, and yet i was in so much pain. I had fevers and sweats and yet no infection. The local ansethesia I got, the tubing disconnected and so that cathether was pulled out. Things went south after that. It will take me a long while to recover from this.

    There is so much work to be done, and it is too much work for the very few ‘believers’. The experts are now at retirement age with no one to take over. Scary times.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I agree with this and enjoy hearing updates, even if they are short.

    I am sorry to hear this @Kati and hope that you are on the road to recovery and feeling better soon.
     
  3. Nickster

    Nickster Senior Member

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    @Janet Dafoe (Rose49). Hearing small things such as cleaning out the "gunk" of the nano needles gives a visual of the work that's being done. Also, working until 3am -such dedication! But, you need your sleep too.

    So grateful for the hard work that you are doing!
     
  4. Alvin2

    Alvin2 If humans were rational...

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    I very much like hearing about this sort of stuff because it gives up hope and keeps us in the loop. It also gives us ideas to work on which may lead to new theories we can send to you and Ron.
    I had wondered about blood storage because i recall Dr Davis saying they could not go back for more and i wondered what if a valuable species breaks down over time so its very interesting to hear information from your end about this :)
    In my replies earlier perhaps i was not clear about the big picture, its not that i think journal publications and peer review are the best way of doing things, its just that they are what he have so far and a new system has to be proven before the old system is dismantled. A new better system is of course welcome.

    BTW were you able to get Domperidone for Whitney?
     
    edawg81, Wally, rosa and 7 others like this.
  5. Countrygirl

    Countrygirl Senior Member

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    Thank you very much @Janet Dafoe (Rose49) for keeping us posted on the progress................all the little details are of great value to us as it helps us to feel connected to the research. We are grateful for your time, considering how much you have to cope with.

    I hope you are able to get sufficient rest too.

    Please thank Dr Davies for us and tell Whitney we are rooting for him. :)
     
    Gemini, edawg81, Wally and 14 others like this.
  6. edawg81

    edawg81 Senior Member

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    I love hearing about every little detail. Actually because I have a background in science, I would try to help if I wasn't so sick. Keep the news coming. We tend to fixate on the disease and the progress, due to our condition. Setbacks like results being incorrect actually make me (imo) MORE hopeful because I understand the context of trial and error and love hearing about problem solving on ANY level. That said I know the industry disaproves of unpublished results, but this is different, peoples lives are at stake. Updates good or bad reminds us that while we suffer someone is pouring over datasets in hope to help us. Thank you for everything EVERY reseacher is doing for us....
     
    Gemini, happy, CJB and 11 others like this.
  7. Ben H

    Ben H OMF Correspondent

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    Molly98, Gemini, happy and 8 others like this.
  8. AshleyHalcyoneH

    AshleyHalcyoneH Open Medicine Foundation

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    Yes! There is already an instagram but it has not been heavily used. I have just agreed to take it over and we will be attempting to post more frequently. An announcement about it will be made next week!
     
  9. KristenSF

    KristenSF

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    Last edited: Nov 14, 2017
    bspg, Molly98, Aroa and 2 others like this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    @KristenSF Thank you for posting that and I am not on Instagram and would not have seen it. Are they at his new office in the photo?
     
  11. KristenSF

    KristenSF

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    @Gingergrrl I'm not sure! I've been to the new office a few times but I don't recognize the background. I have an appointment with Dr. K on Monday (and will be there all day for my third Rituxan infusion) so I'll be sure to ask him about this photo and report back! :)
     
    Gemini, bspg, Molly98 and 1 other person like this.
  12. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Kristen, and I have not been to the new office yet so I was not sure... and good luck w/your next Rituximab infusion!
     
    KristenSF likes this.
  13. Michael_venice

    Michael_venice

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    I'm confused. Kaufman...left OMF? Did they take the clinic name? I hadn't been able to see him due to $ issues, and then this office split happened and maybe I missed something (note: I searched threads to see if I could figure it out, but couldn't find anything)
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Michael, Dr Kaufman and Dr. Chheda left OMI a few months ago along with Lorie, Adie, Ellen and started a new private practice called the "Center for Complex Diseases".

    It is still on the same street in Mtn View, just a few doors down but has new ph#, fax#, email, etc. You can easily have your medical records transferred to the new practice if you choose to (which I did) or you can stay with the original OMI.

    I have no idea when or where the photo was taken that Kristen posted and it doesn't look like OMI (but I have not been to the new office in person yet). Hope this helps.
     
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  15. Michael_venice

    Michael_venice

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    you are pretty much always helpful. :) thank you
     
    Gingergrrl likes this.
  16. bspg

    bspg Plant Queen

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    It appears to me to be Dr. K's new office. Looks a little updated from when I saw him this summer and they had just moved in to the new space.
     
    Gingergrrl likes this.
  17. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I was just curious and I bet it's the new office... will wait for confirmation from Kristen ;)
     
    bspg likes this.

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