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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Were/are you a healthcare provider who now has ME/CFS? Join our website advocacy project!

Discussion in 'Advocacy Projects' started by Gingergrrl, Feb 13, 2015.

  1. Butydoc

    Butydoc President

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    Hi Gingergrrl,

    I wasn,t singling out any individual for not volunteering. Clearly many of our members are too sick to volunteer. I,m actually speaking in general terms and to those who have the energy and health to help. Specifically those individuals who want to work on this new web site. If our members don't see the value in this web site and feel they need to start their own site, then there is a problem with our site. I would like to identify what those problems are and try and fix them. My response was meant to spur debate and try to improve what Phoenix Rising has to offer.

    Best,
    Gary
     
  2. Sushi

    Sushi Moderation Resource Albuquerque

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    This in no way minimizes the contributions of the wonderful volunteers Phoenix Rising has--a toast to all of them! :thumbsup: But the fact is that we have way too few people trying to keep a very complex forum and non-profit organization running. The way it is going now, the health of those volunteers is suffering from trying to do too much, and this is not sustainable.

    As far as volunteers, we are more or less "running on fumes" and all the great suggestions that come in, and which would be great to implement, just can't be handled by the few volunteers we have.

    Sushi
     
    Butydoc likes this.
  3. daisybell

    daisybell Senior Member

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    I am now confused as to what is actually being planned. In my mind, I had envisaged a site which was just the stories of health professionals, which could be used as a link for educating other health professionals about the illness and challenging perceptions, and a point from which stories could be taken to illustrate issues.

    If this is the case, then the site would in no way replace PR, but hopefully could be somewhere that health professionals would visit....

    Am I on the right track?
     
    beaker likes this.
  4. Gingergrrl

    Gingergrrl Senior Member

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    @daisybell Yes, this is exactly what we envisioned as well. It was not to be a forum or anything interactive but simply where physicians (and other former medical professionals with ME/CFS) would have their stories posted and it could be used to educate non-believing physicians (i.e. who post on Medscape) etc. Dr.Patient could explain it much better than I can since it was his idea (only if he wants to elaborate of course.)
     
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  5. Sushi

    Sushi Moderation Resource Albuquerque

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    Unbeknownst to the members who put this project forward, a very similar project had been planned (was on the wish-list) for Phoenix Rising, as part of its larger mission, but Phoenix Rising didn't have the volunteers available to implement it.

    Sushi
     
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  6. Butydoc

    Butydoc President

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    Hi Daisybell,

    I believe the concept about the new site is good. I just feel that the potential members who are willing to put in such efforts to start their own site dilute the number of people who are capable of helping with this web site.
    Again, why reinvent the wheel, i.e. forming a non profit organization, paying for the web site, opening banking relationships, monitoring the threads etc. Would't those efforts be better focused on the project rather than the structure and running of a new web site. It is hard for all of us who volunteer to see our members volunteer on another web site where there is such a need with this web site in term of people helping out or promoting new projects.

    Best,
    Gary
     
    Sushi likes this.
  7. daisybell

    daisybell Senior Member

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    If this is something that PR had planned to do anyway, it seems to me that it would be much better to keep the project in-house... I am happy to help out.
     
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  8. snowathlete

    snowathlete

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    Although I know what PR is saying about not having enough volunteers, there may be projects where PR is not the most appropriate platform; it really depends on what the project is.

    A project like this one being discussed in this thread might well be an excellent one for PR to provide a platform for however. Probably PR is a good platform for the majority of such efforts. Though I am not involved in the details so I can't say for sure, it just seems that way from the outside looking in. PR obviously has lots of traffic, and is already set up and so the same project here would likely be more sucessfull here than on a fresh new site. And easier/quicker to implement too.
     
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  9. GracieJ

    GracieJ Senior Member

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    If you all can pull this off one way or another, please do.

    Thanks to @halcyon, last week I read one of Thomas Asheville's articles for the first time. I had seen quotes from it once or twice. Arm-pumping YES!! that I was then able to e-mail it to family.
     
    halcyon likes this.
  10. Hip

    Hip Senior Member

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    This is a very interesting idea.

    In theory, as a conservative estimate, there should be around 2250 physicians in the US who have ME/CFS, and around 7250 nurses in the US who have ME/CFS.

    This is because there are around 900,000 physicians (both primary care and specialist) in the US (data from here), and if we take a conservative figure of a 0.25% prevalence of ME/CFS, that would work out to 2250 physicians having this disease. Similarly, there are around 2,900,000 nurses in the US (data from here), so that that would work out to 7250 nurses with ME/CFS.

    It's possible though that these figures might be a bit higher, since ME/CFS is often virally triggered, and those who work in health care may have greater exposure to viruses, from their coughing and spluttering patients.
     
    Last edited: Mar 17, 2015
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  11. Valentijn

    Valentijn Senior Member

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    Phoenix Rising is already quite a bit more than a forum - the forum is just one section of the website. It already has blogs, an articles page (which is a lot more complicated that it looks!), and a wiki.

    Basically, the Phoenix Rising website already has the capability to host and support such a project, so it would save some effort in getting a separate site set up. It also already has some volunteers who could probably assist with the technical aspects, and many who could help with organizational aspects and getting things implemented and maintained. And it already has a ton of internet traffic, and topics here usually get listed quite prominently when doing a google search.

    Hence it makes the most sense to simply put the testimonials and such here somewhere, instead of starting a new site for that specific purpose. It wouldn't have to be in a forum format, and as you and others have suggested, it probably shouldn't be in a forum format :D
     
    Last edited: Mar 17, 2015
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi Thank you for saying that and I found the original comment hurtful as I have now been voluntarily creating the b-day threads for five months, even when I am too sick to eat or walk, I have my b-day list and create the threads. I have had people tell me that it was the only greeting they received for their b-day or that it made them cry so I know it is important work and I will continue to do it as long as I can.

    I created this thread to help Dr.Patient with an idea that I supported- nothing more and nothing less. We had no idea that PR was planning to create this same idea and do not understand why this initially led people to be angry with us.

    I have been very sick the last week due to multiple set backs and severe nerve pain and cannot take on anything new (regardless of where this project occurs) and am bowing out of this thread! I believe this will play out however it is meant to be.
     
  13. Valentijn

    Valentijn Senior Member

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    No one was angry, or making accusations regarding anyone's lack of volunteerism. They were suggesting a more efficient and effective way to implement the project in an attempt to be helpful.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I am not referring to this thread and will just leave it at that. I would love to be able to say more but it would not be appropriate and will take the high road.
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    I think it is a given that Butydoc was commending the volunteers who do give time and energy to facilitate great projects like you are doing. He is, after all, a volunteer himself! :) As am I, and everyone else who contributes to this site. The issue is that there are not enough volunteers and those who are volunteering are spread way too thin--including you!

    Sushi
     
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