1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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CFS/XMRV on Good Morning America

Discussion in 'General ME/CFS News' started by Cort, Sep 25, 2009.

  1. shrewsbury

    shrewsbury member

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    Good Morning Dr Donnica,

    We're so happy to see you here.

    As you browse around you'll notice two things

    1. that we have many ideas of what the public needs to know

    2. pretty much every post expresses that you do an incredible job as "the voice of ME/CFS and thos who love them" . You certainly know how to squeeze everything possible into a sound bite and have that tv "it" factor

    I'm thrilled that you're going to be on the Oz show.

    Now that we know you'd do Oprah, guess we'll have to start working on that too!

    islandfinn:)
  2. Dreambirdie

    Dreambirdie work in progress

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    Me too, IF! Me too. But the Oprah Show is gonna have to be someone else's baby! ;):):)

    I am all OZZZZED OUT! :D:p:p:p
  3. Frickly

    Frickly Senior Member

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    Dr Donnica

    You did an excellent job on GMA considering the time restrictions. I am thrilled that you will be doing the Oz show and have complete confidence in your ability to explain CFS and how it effects our lives. I am ready to come out of the closet!:) Thank you, Thank you, Thank you! Now I have to put in that call to Oprah.:D
  4. gracenote

    gracenote All shall be well . . .

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    car metaphor gone bad

    Thanks, DrDonnica for your enthusiasm and excellence in being our ally. And I am so sorry that you are dealing with this in such a personal way. I can't imagine one of my children having this illness, and then to have your partner ill at the same time! You definitely have my heartfelt support.

    I'm wondering, though, if we can improve on the car metaphor. I think many (most?) of us would not be good to go if we had more "gas" put in our "cars." If I had more gas put in my car right now it still probably wouldn't run or perhaps it would (please excuse me jumping metaphors here) blow my circuits. I wish I could extend the car imagery in a more knowledgable way, but here goes. My car needs new electrical wiring, it's computer system needs to be reprogrammed (???), the air filter is clogged, and the fan belt is broken. It probably needs new U-joints and a couple of tires replaced while we're at it.

    Of course, I'm just making this all up because I don't know cars except what has gone wrong with mine in the past, but I think you get the idea. Someone, anyone want to jump in here?

    Thanks DrDonnica. I hope you stick around this forum. It is a delight to have you. Will be looking for you on Oprah someday!
  5. Frickly

    Frickly Senior Member

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    car metaphor

    I agree that this metaphor dosen't explain everything. Although I receive weekly glutithione/ATP injections (gas for the car) this does not rid my body of the bacteria and virus' that cause much of the pain, fevers and rashes. It is a vicious cycle that effects the whole body.
  6. Andrew

    Andrew Senior Member

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    I deleted my previous message because it was not helpful. I'm going to try again.

    I think the presentation went very well, and I was thrilled to see important topics covered, such as post excision malaise. I was also thrilled to see the differentiation between CFS and feeling tired. I must say, though, that the strongest picture I got was of someone being able to rest for a day, and then the next day they are off for shopping and soccer. I think that illustrates a high-functioning pwc, and missed how disabling this illness can be, how it increases our risk of cancer, hurts the immune system, etc.

    I hope some of this helps.

    I'd change the end of the car one to: "...except we can't simply put more gas in. No amount of rest removes CFS. It is like the system is broken and nobody can figure out how too fix it. "

    Regarding the name: "Calling it Chronic Fatigue Syndrome is like calling tuberculosis "Intermittent Cough Syndrome." It misses the point. It trivializes the illness. Everybody coughs from time to time, but it is hardly comparable to the kinds of problems that Tuberculosis can cause."

    On depression. "The symptoms of CFS are not the same as depression. Depression doesn't lessen when someone lies down. Exercise doesn't make depression worse. Sore throats are not a symptom of depression. And it doesn't stop there."

    Here's an analogy to my experience. Problem is, we are all different. But maybe this will help in some way: "Have you ever had a case of the flu where you were so sick you could hardly get out of bed. That forcing yourself to go shopping made you twice as sick. Where you could barely concentrate. Where delirium kept you awake half the night, and in the morning you were soaked in sweat. That's how I've spent much of the time since getting CFS. The rest of the time I've felt about half that bad. But I still wouldn't wish this on anyone."
  7. starryeyes

    starryeyes Senior Member

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    Those are excellent ideas Andrew. I like all the ideas in this thread because they are all true and help illustrate what we're all experiencing.

    Dr. Donnica, it's great to see you here and hear your opinions. I'm very grateful that you're a spokesperson for us.

    Thank you,

    tee
  8. JustJack

    JustJack put on yer dancin' shoes

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    Thank you so...

    Dr Donnica

    I am new here, but not new to the illness. First incident 1978 has led to full blown ME/CFS 1997. My steady 12 year progression downhill has led now to two years housebound without remission. I knew this relapse was permanent the minute it hit.

    I speak for all of us when I say thank you, thank you, for being a smart, strong clear voice finally, one that knows what they are talking about, and for seizing the moment. This is the moment, I feel it for the first time.

    The terrain has changed and the David's might just win!

    Thank you so very, very much,
    JustJack
  9. PoetInSF

    PoetInSF Senior Member

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    I'm thinking, if I was someone not familiar with CFS, I'd be left with "tired women" after watching this video. I know Dr. Moore also talks about other things like "post-exertional malaise", but I don't think they register well, perhaps because the term is too abstract/technical.

    People are already biased with "fatigue", thanks to the name CFS, I think we would do better off if we talk less about fatigue and women and focus more on reduced physical/mental ability (disability) and flu-like post-activity sickness to brand the disease. That, of course, could be a reflection of own bias since those are my biggest problems, not fatigue or ache that I can manage as long as I strictly control my activities.

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