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August 8th – Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 6, 2013.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This is a really important question. The last couple of weeks have been particularly hectic for me, so I am just now giving it some thought. Maybe we can use some of these ideas next year.

    In the U.S. the newspapers have advise columns that will sometimes publish short 'letters' about special health related days. I doubt that M.E. is even on their radar, but if they got enough letters, they might publish one. The letter could contain a link to this or a similar article.

    My newspaper carries an 'ask the doctor' column. Again, if enough people wrote in and asked that information about ME be published on Remembrance Day, it might happen. The request could ask that this or a similar link be included (which would also give the doctor a way to inform himself).

    I think that this would make a good radio show/segment. Start with Diane and why she founded the day. Move next to Sophia Mirza as the reason that August 8 was chosen. Finish with an account of Katrina Hansen who is currently suffering much the same fate as Sophia. (I hope that this will not be the case by next Remembrance Day.) I am not media savvy and do not have the faintest idea how to get this accomplished. National Public Radio’s The Diane Rehm Show covers health related issued fairly often. American Public Media’s The Story might be a possibility. I have heard a health related show (can’t think of the name) on the BBC or CBC.

    I suppose TV would be the ultimate goal, but I really have no idea where to start there.
  2. SanDiego#1

    SanDiego#1 SanDiego#1

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    Beautiful Tribute Gabby. Most educational Post.
    I did not know Dr. Bell was treating ME-thought it was just CFIDS,

    My Best to getting better for all of you with ME.

    San Diego#1
    allyb, Simon and Nielk like this.
  3. Mark

    Mark Acting CEO

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    They talked about this a bit at the IiME conference, and they seemed to be talking about it as (partly at least) a 'translational medicine' model. They talked about the unit enabling them to have a space where people could be observed and cared for, 24 hours, by existing hospital staff (with a range of specialists available) over the course of a few days. They seemed to me to be suggesting mainly short stays rather than long stays, and I don't think there are ever so many beds, but it sounded like some kind of care and treatment (possibly translational/experimental) might be on the agenda as well, not purely research. It will certainly be very interesting to hear how they end up using this facility.
  4. Liz

    Liz

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    Thanks so much for the AWARENESS. I am housebound and often confined to bed and just knowing that this organization is out there, and that there are others struggling just like me -- it gives me hope. Thank you.
    SpecialK82, Simon, Valentijn and 3 others like this.
  5. SanDiego#1

    SanDiego#1 SanDiego#1

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    Liz- It is EASY for someone to say-"TAKE IT EASY".-but do want you can to take care of yourself -or ask others for help. There are several Infectious Disease Dr. in Atlanta area. One group is over in Dekalb Area. Also Dr. Bradstrreet who is in Cumming Ga. that treats ME, and and Cfids patients.Neuro Dr. that is good is Doug Stewart in Buckhead.

    Get better.

    San Diego #1
    .
  6. Nielk

    Nielk

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    Today is August 8th day. In it's honor, Greg Crowhurst posted this very touching video.
    Ember, SanDiego#1, SpecialK82 and 2 others like this.
  7. Nielk

    Nielk

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    The severely ill Myalgic Encephalomyelitis patients and their families really feel invalidated by the show of solidarity for them. I would encourage everyone to write words of understanding and support on this special day.
    SanDiego#1 and allyb like this.
  8. SpecialK82

    SpecialK82 Senior Member

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    Absolutely heartbreaking videos from patients, I think we must insist as best we can that severely ill patients need to be included in research studies. Soft and gentle hugs to all the victims of severe ME today - patients and caregivers both. :hug:

    Nielk - terrific job in pulling this all into an article!
    Nielk, Valentijn, SanDiego#1 and 2 others like this.
  9. Ember

    Ember Senior Member

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    Laurel Bertrand's ME/CFS video

    "Here is a re-edited version of Laurel Bertrand's fine ME/CFS video. Laurel has done a service for us all in making this essential video" - CFS Patient Advocate

  10. SpecialK82

    SpecialK82 Senior Member

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    I feel a bit distraught that some of the 25% may feel that they have been abandoned by the ME community (as mentioned in Greg Crowhurst's video above). I am very happy that he said it, only upset that people may have felt this way.

    I always feel that our community is family and I feel such a kinship with everyone in it. I hope we can come up with some creative and easy ways to make the 25% feel more included. I know that Phoenix Rising has too much going on at the moment, but I wonder if starting a sub-forum for carers (caregivers) would be useful? I know the pain and devastation of being a caregiver to a family member with cancer, I cannot think of a worse torture than watching a loved one suffer. The anguish that these people carry must be staggering.

    If at some point in the future we could establish a place for carers to grieve, to strategize and to support each other, I think it would do some good. I would recommend that any patients be forbidden to be a member of the carers forum so that they can feel free to express themselves completely with each other. I just wonder.....would there be enough carers that would join such a group? What do you all think?


    And to my dear 25% brothers and sisters:
    We are not just standing with you, we are lying right beside you feeling your pain, hearing your cries, and whispering in your ear "I understand you, you are not alone, you are so loved, embraced and cherished."
    heapsreal and Purple like this.
  11. Nielk

    Nielk

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    I jus found this posted on Justice for Karina Hanson Facebook page:
    We are excited to share an article with an interview about Karina Hansen was published in Danish newspaper BT today, 13th of August 2012, with vice chairman Cathrine Engsig from the ME association, Denmark:

    Association: 24-year-old is mistreated.
    Hammel Neuro Center's treatment of 24-year-old K can have serious consequences for her health, according to patient association.



    [​IMG]
    Little Bluestem and Valentijn like this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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