1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Dr Donnica's Recent Book & Articles

Discussion in 'General ME/CFS News' started by Dreambirdie, Mar 24, 2010.

  1. Dreambirdie

    Dreambirdie work in progress

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    N. California
    Dr Donnica Moore responded to our Sock Project thread this morning. She requested that I copy and paste her message here as well... pertaining to a book and articles she's recently been working on.

     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Thank you Dr. Donnica. I see you are being proactive. This is what we need. I just read the article. Although, from a news structure standard, it is poorly written. The main points and new information is buried way down in the story.
    But, I like that they included many players, touched on all the issues (except the name) and had new information (the part about problems company had in testing for antibodies).

    And while I don't think the book will get us much exposure, I do think it is a story that needs to be told, documented.

    And I would love to have you educating main street doctors. That is the key, in my opinion. Hope they will believe it.

    I would love to see a brochure in the doctor's office. Credible because it is in doctor's office and visible.

    Although you are already doing so much, Dr. Donnica, if you or CAA could come up with an easy and unique idea of what we could do to create more awareness, that would be great. Let us help you help us.

    But, we need a leader and an idea so we are all doing the same thing. Obviously, the campaign needs to take into consideration our limitations, both in energy and money.

    And I am sorry your son is crashing.

    Tina
     
  3. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Thank you Dr. Donnica! We're lucky to have you. :Retro smile:

    I'd like the see ME/CFS brochures in doctors offices too but I'm afraid they will contain info saying we respond well to CBT and GET or implying this even if those acronyms/words aren't used.
     
  4. Navid

    Navid Senior Member

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    not a journalist...so not so savvy about the ins and outs of article writing....

    but i thought the article was good. it gave me hope. it explained the situation well.

    thanks dr. donnica, cort, dr. vernon and anyone else involved.

    lisag
     
  5. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    Tina, Dreambirdie first contacted Dr. Donnica to tell her about the Sock It To ME/cfs project. Dr. Donnica's response was in regards to that. I think that's the awareness campaign we need. If you check just the posts that have been posted on that thread just today, here, you'll see that it's gaining momentum tremendously---almost too fast. We need to get behind the sock project and find some well volunteers who can put energy into it alongside us. From Alaska's governor to Dr. Donnica to all of us who have posted on the thread, it's clear the sock project generates great enthusiasm! It not only will generate more awareness but can focus advocacy. Think "AIDS quilt" and you've got the idea!
     
  6. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    I commented on the article and here, in case they don't publish my comment, is what I said.

    There is so much in this article good and bad and inconsistent, but that is not a criticism: that makes it a very honest reflection of the state of CFS research and popular media today. The article could almost be summarized thus: "In the face of persistent patient gullibility and suspicion, big pharma is nevertheless eager to capitalize on the moneymaking opportunity presented by possible XMRV causality in CFS." On the other hand, the current situation could be summarized like this: "In the face of inconclusive research and a sensationalizing popular media, CFS patients are nevertheless willing to remain calm and objective, waiting for satisfactory studies to prove or disprove the latest findings, though it is true that patients are growing more restless and even activist in demanding that the CDC make a reasonable new disease definition and recommendations for treatment." Finally, the possibility of an infected blood supply is a horrible specter to raise, but I applaud the sober and professional manner in which this was addressed. Indeed, public health concerns may mobilize the search for a cure like no amount of patient suffering could.
     

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