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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A Plug for Coverage for CFS and XMRV on my local public radio program Forum on KQED

Discussion in 'Action Alerts and Advocacy' started by illsince1977, Dec 21, 2010.

  1. illsince1977

    illsince1977 A shadow of my former self

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    My local public radio station, KQED, has 2 hours of interview and coverage with opportunities to call in weekday mornings. This morning they wanted to hear from their audience about what was the most important story in your community or neighborhood in 2010 as a tie in to their launching a new community driven coverage initiative http://www.kqed.org/news/publicinsightnetwork/.

    I equate community not with my local geographic community (since I'm so rarely out in it), but with my fellow CFS/ME patients on the internet. Amazingly I was one of the callers included in the hour at 40:45, if you want to listen. http://www.kqed.org/a/forum/R201012211000

    I, too have been consumed with the release of the 4 papers examining contamination, and it may seem I omitted this most pressing issue, but please keep in mind that I was nervous and asked to respect their request that I keep it short and impersonal. One never knows when one's remarks will be truncated. My goal was to raise awareness of the lack of coverage toward the end of perhaps initiating more coverage in my local media, not hash out any issues.

    This is a wonderful, intelligent, respectful, fair and balanced show and I think the regular moderator, Michael Krasny, is the best interviewer/moderator in the business who displays an amazing depth of understanding of the topic of the hour, no matter what it is. Their substitue moderators are very good, too. Obviously the indispensable staff support is excellent. It's quite a balancing act to moderate a show in this format. I'm very fortunate that it's on my local station and I can listen to it every morning. I have contacted them with suggestions that they devote an hour to this issue. I am an avid listener and a supporter of the station.

    I'm pretty worn out tonight, but hoped my posting this might be a bright note in an otherwise dismal news day/week for us. You are in my thoughts tonight.
  2. Hope123

    Hope123 Senior Member

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    Good for you, illsince1977.

    Yes, I would suggest people in the San Francisco Bay area or California especially e-mail the show Forum and host Michael Krasny with this topic. The Bay Area has a number of people/ researchers involved with ME/CFS that would be interviewable. Forum covers national issues but also has a bent toward Californian issues. I listen to Forum oftentimes when I'm too sick to get up and have to lie in bed.
  3. illsince1977

    illsince1977 A shadow of my former self

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    Thanks, Hope. Unfortunately I've been too sick to get out of bed since May, so I listen almost every day.

    I always love seeing your avatar. It's a beautiful image. Did you take it?
  4. jewel

    jewel Senior Member

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    Thanks for this. Posted to the link also asking for more coverage on this topic. Take care, J.
  5. Hope123

    Hope123 Senior Member

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    Avatar

    I'm sorry you haven't been able to get out of bed for the last few months. I hope though that someone has been able to shift your bed so you are able to see different views. I also find lying outside when it's nice to be relaxing.

    I got the image off a website which I don't remember now. It's a "moonrise" and I have another picture of a moonrise with San Francisco in the background. I didn't specifically look for these pictures but they just struck my fancy.

    Many years ago pre-CFS, I had a boyfriend who was into astronomy and he took me on a "night time" picnic in late summer, so it was warm, along one of the Great Lakes. I thought it was a nice idea but then the real amazing part occurred later in the evening when the moon came up so big, I didn't recognize it at first. Here's a picture similar to what we saw:

    http://gallery.gmayfield.com/scenic/moonrise102704s

    He was also an avid moutain climber and told me about how moonlight could be so bright some nights bouncing off the snow that they didn't need flashlights. I also got the chance to see the comet Hyakutake at an observatory in 1996; astronomers think this comet only comes around every 70,000 years.

    Nothing like astronomy to make you feel your place in the universe.
  6. BEG

    BEG Senior Member

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    Southeast US
    Way to go, illsince1977! This is indeed a bright spot and thank you so much. Your message about XMRV and blood transmission reached a (very) wide audience. You are an inspiration for all because you have shown what can be achieved for "the community" while lying in bed.
  7. illsince1977

    illsince1977 A shadow of my former self

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    Hope-
    Interesting! I too dated an astonomy buff. He actually programs computers that decode telemetry from satellites on NASA missions. Love that moonrise image. You must be aware that there was a lunar eclipse the other night? Unfortunately we in the Bay Area couldn't see it because of the cloud cover. Bedridden as I am, I still laid outside on my patio on a cushion to take in the Perseid meteor showers this August, as I always try to do.

    How kind of you to even give a thought to my everyday experience of the world! My bedroom has a sliding glass door I look out all day into my yard. The view is toward the west, so I'm still able to catch many sunsets including the occasional fantastic one! Sometimes I can see Venus, Jupiter or the moon. It just depends upon how the stars are aligned ;) . In my rather limited life I have endless blessings if I'm just not in too much physical or psychological pain to acknowledge them. Almost every day I remark how lucky I am to have the sliding glass door in the bedroom. I go outside when the weather permits, lie on a canvas swing on the patio and enjoy the air, the sky the birds and the squirrels.

    Brown-eyed girl-
    So am I (a brown-eyed girl).

    I am so grateful for all of you, for your sharing your pain, your trials and tribulations, your support, your concern, your encouragement, your understanding and your knowledge! It's only knowing you're out there and that we're on the same side that gives me the courage or makes it feel worth the effort to speak up!

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