1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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XMRV International Advocacy Strategy: Help us start a Facebook page?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Dec 21, 2009.

  1. Frickly

    Frickly Senior Member

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    XMRV Global Action?

    I like this one and we could make the web domain name XMRVGlobal. Will have to make sure this is available.

  2. Countrygirl

    Countrygirl Senior Member

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    Hello Bully Beef,

    Just to say that a friend of mine, who was ill for 20 years with M.E. also had it officially recorded as his cause of death, too That was about 8 years ago, so Sophia was not the first in England.
  3. Frickly

    Frickly Senior Member

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    Mission: To bring awareness to the possible connection between diseases such as Chronic Fatigue Syndrome, Autism and Gulf War Illness and to advocate for XMRV research, testing and treatment.

    Ok.....help me out guys. What disease do want listed? Any ideas on how to improve on the above?

    Autism
    Atypical MS
    Cervical Cancer
    Gulf War Illness
    Irritable Bowel Syndrome
    Lyme Disease
    Multiple Chemical Sensitivity
    Niemann-Pick Type C Alzheimer’s
    Prostate Cancer

    It's difficult to put this whole list in a mission statement


  4. bullybeef

    bullybeef Senior Member

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    I am very sorry to hear that CG, was her death reported? I understand it is a delicate subject, and if you don't mind me asking (I understand if you would rather not), do you know her cause of death in relation to ME/CFS?

    I have a suspicion that many probable ME/CFS causes of death have been lost in autopsies.
  5. Frickly

    Frickly Senior Member

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    Cort

    Where is this sub forum?

  6. shrewsbury

    shrewsbury member

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    It is a mouthful Frickly (nice typo I just made - Friskly - I like it). Is this getting any closer?

    To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Irritable Bowel Syndrome, Lyme Disease, Multiple Chemical Sensitivity, and Niemann-Pick Type C Alzheimers.

  7. OurDayWillCome

    OurDayWillCome

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    RE groups.... Just remebered something I read on mefmaction.net.

    "Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes”."

    http://www.mefmaction.net/documents/ME_Overview.pdf

    Maybe a list of Primary disoeders, then comorbid?
  8. fresh_eyes

    fresh_eyes happy to be here

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    I don't know about you guys, but I always get confused when the domain name is not the same as the site name (like Phoenix Rising) - so I'd prefer xmrvglobalaction.org.

    Are we ready for a logo? XMRV Global Action?
  9. Lily

    Lily *Believe*

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    I agree fresh eyes....

    Let's see a logo:D:D
  10. Frickly

    Frickly Senior Member

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    xmrvglobalaction.org is available and I like it too. I think we are ready for a logo unless anyone objects to the above.
  11. Frickly

    Frickly Senior Member

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    I agree

    We can refine the list once I get all the other info I need. Possibly take out the Irritable bowel syndrome andmultiple chemical sensitivity.

  12. fresh_eyes

    fresh_eyes happy to be here

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    Great. Logo will be done by tomorrow. :) It can be refined as we go on too.
  13. shrewsbury

    shrewsbury member

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    Good memory ODWC

    So if we had primary diseases listed in the mission statement, it would be something like this:

    To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Lyme Disease, Niemann-Pick Type C Alzheimers.

    And elsewhere there would be the list of comorbid entities?

    Co-morbid Entities:
    Myofascial Pain Syndrome (MPS),
    Temporomandibular Joint Syndrome (TMJ),
    Irritable Bowel Syndrome (IBS),
    Interstitial Cystitis,
    Irritable Bladder Syndrome,
    Raynauds Phenomenon,
    Prolapsed Mitral Valve,
    Multiple Chemical Sensitivities (MCS),
    Sicca Syndrome,
    Orthostatic Intolerance
    Depression,
    Migraine,
    Allergies,
    Hashimotos thyroiditis,


    Such co-morbid entities may occur in the setting of ME/CFS. Others, such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be overlap syndromes.

    IMO, if we were to post this, we would find the source that mefmaction used if we could.
    http://www.mefmaction.net/documents/ME_Overview.pdf


    I think I remember that in lists, people tend to remember the first and last few so thats where you want the big hitters.

    Also think its important to have every bit of info supported, with the link nicely hidden.
  14. OurDayWillCome

    OurDayWillCome

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    Frickly... OK with me. If building numbers and support is the aim, then the more, the better I would think. And I don't believe there is any clear idea at this point just how many disorders will be linked to XMRV.
  15. OurDayWillCome

    OurDayWillCome

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    @islandfinn...glad I remembered that! I am not always so fortunate.
  16. Frickly

    Frickly Senior Member

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    Ok while Islandfinn is working on the logo we can think about the position statements. We can have up to five. I jotted down a couple but please feel free change them as I am not the writer I used to be.

    Name: XMRV Global Action – xmrvglobalaction.org

    Mission: To advocate for XMRV research, testing and treatment and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Lyme Disease and Niemann-Pick Type C Alzheimer’s.

    Position 1 We believe there is a connection between these diseases and the common factor may be XMRV.

    Position 2 More effective advocacy is needed and we believe bringing these groups together can accomplish this goal. We believe there is strength in numbers.

    Position 3 We believe it is important to Accelerate availability of XMRV testing, research and care.

    Position 4 There is a need to develop a coherent message and effective public relations strategy that demands swift and decisive redress for these decades of medical neglect.

    Position 5
  17. shrewsbury

    shrewsbury member

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    xmrvglobalaction.org mission statement

    Here's where we've gotten so far in roughing out a mission statement:

    To advocate for XMRV research, testing and treatment, and to raise global awareness of its possible connection to diseases such as ME/CFS, Prostate Cancer, Fibromyalgia, Autism, Atypical MS, Cervical Cancer, Gulf War Illness, Leukemia, Lymphoma, Lyme Disease, and Niemann-Pick Type C Alzheimers.

    I found a site that has good examples of mission statements. Maybe it would help refine our mission statement.

    eg


    Later, I'll try to look for resources on good position(ing) statements, and know some orgs also have vision statements, so maybe them as well.
  18. Frickly

    Frickly Senior Member

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    Thanks,

    I edited my last post to revise the positions using some of Parvo's info on the first post.
  19. gracenote

    gracenote All shall be well . . .

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    use of words

    This is really spectacular. My two cents . . .

    I think using words like "To advocate . . .", "To provide . . .", is much stronger than "We believe . . ." for stating our mission and positions.
  20. fresh_eyes

    fresh_eyes happy to be here

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    a few thoughts

    I wonder if we should move the names of the diseases out of the Mission and into the first Position? I'd like it if the mission was really easy to take in. Also it might be important to provide just a little more info in case people are totally unfamiliar with the research? A la:

    Our mission is to create a global advocacy network for diseases associated with the retrovirus XMRV.

    Position 1: Preliminary studies show that XMRV is associated with many poorly-understood illnesses, including ... Further research, testing, and treatment is urgently needed.

    Another position idea:

    XMRV is likely in the blood supply. This potential contamination is a worldwide public-safety issue that must be given the highest possible priority.

    ETA I agree with gracenote re: phrasing, getting away from the word "believe".

    Rock on, advocates!

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