Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Activism Events?

Discussion in 'Advocacy Projects' started by SB_1108, Jan 8, 2016.

  1. SB_1108

    SB_1108 Senior Member

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    I have a unique opportunity to get more involved in CFS advocacy. I’ve been sick for six years - I’m currently moderately affected by the disease but just a few years ago I was completely bedridden. I could (at any time) become severely affected again so while I have SOME energy, I would like to use it towards a good cause.

    I still can not drive but my parents have recently retired and would also like to participate in CFS advocacy. Are there ever any walks/pickets/protests/etc? Any kind of event where our physical presence can be seen? I realize that because of the nature of our condition, these types of events would be impractical but I'm sure there are others that are moderately/mildly affected that could participate. Or caregivers/friends/family.

    Has this sort of thing ever occurred or is there something planned for the future that I'm not aware of?

    I’m thinking 1980s/1990s AIDS activism type events...
    [​IMG]
     
  2. SB_1108

    SB_1108 Senior Member

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    Oh I should mention that when I say "walks" or protests... I'm counting on many/most of us being in wheelchairs (or stretchers), being pushed by someone healthy.

    But realistically, the most difficult part of all of this would be the travel to and from where ever this event would occur.
     
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  3. Effi

    Effi Senior Member

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    ahimsa and Valentijn like this.
  4. SB_1108

    SB_1108 Senior Member

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    I'm a member of a local chapter on MEAction but they did not seem at all interested in meeting face-to-face.

    Maybe I'll start an initiative on there? I just didn't know if there was something already planned?
     
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  5. Denise

    Denise Senior Member

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    @SB_1108 - many "in-person" opportunities depend on things like where you are located, whether you can travel to a location....
    Do you mind sharing that kind of info? (DM me if you prefer.)
     
  6. SB_1108

    SB_1108 Senior Member

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    @Denise - I'm located in the United States... I'm able to travel domestically. Anywhere on the East Coast would probably be doable for me. I was thinking I'd most like to get involved with any efforts in DC.
     
  7. Denise

    Denise Senior Member

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    As you know this disease makes it very difficult for people to be out and about. Even caregivers have difficulty - either they can't leave the patient, or the patient is too sick to be out, or the caregiver has to also somehow try to work as well as provide care....
    And trying to get a group of patients (and caregivers) together can be a significant challenge.

    That said - from time to time there are actions involving physical presence. There have been demonstrations (outside of NIH and HHS for instance) and I believe that sometimes there are small (that's about all that can be mustered) groups that go to congressional offices on the Hill.

    I have not heard of anything currently being planned (though my not having heard doesn't mean much).
    If you have an idea, please consider developing it and sharing it with MEAction (, MEAdvocacy, and here, etc.) to hopefully engage participants and helpers.
     
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  8. *GG*

    *GG* Senior Member

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    Are you participating in that study at Georgetown University? I was looking into it, just don't want to travel in the winter, they might have all the participants they need now. Kind of hoping they don't. Sounds like an interesting study. Dr Broderickk I think is his name?

    GG
     
  9. SB_1108

    SB_1108 Senior Member

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    This is exactly what I am interested in... a demonstration outside NIH/HHS/CDC would be perfect or the opportunity to go discuss our illness with Congressional Staffers on the Hill. I'm just not sure how to move forward? Who do I contact to let them know I would like to participate? Or how could I arrange this? I'm not educated on the steps involved.
     
  10. *GG*

    *GG* Senior Member

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    Concord, NH

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