1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 12, 2011.

  1. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    Thanks, Wayne.

    I recently sent her links to CFSAC Science Day (which has a good collection of talks from well-known ME/CFS researchers) and also some CAA webinars which talked about various biological findings in ME/CFS. I agree that my bigger concerns aren't centered on XMRV (although it is important to pursue this) but rather that if XMRV is not it, scientists, researchers, universities, and the government will go back to "business as usual" -- i.e. ignoring ME/CFS for another 25 years.

    We need to do a better job of "selling" ME/CFS as an illness worth investigating whether it is related or not to a virus. The medical journals are full of non-novel studies, analyses of huge data sets, case reports of rare illnesses but no one seems to realize that yes, you might be taking some risk with ME/CFS research but that is how great researchers are made, through discovery/ investigation/ treatment of new/ mysterious illnesses, not through repeating what everyone else is doing.
     
  2. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Hope,

    I think the points you raised previously were excellent and well worth remembering, but in light of this last article and it making the front page over those that I would have thought appealed more to the readership you identified - it raises the issue now, I personally think, of greater editorial control and that might not produce articles of the kind we are hoping for. So I will be following ADM articles from here on in with a lot more interest.
     
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Email to Amy from Pat Sonnet - a member of the Board of Directors for Phoenix Rising

     
  4. CBS

    CBS Senior Member

    Messages:
    1,366
    Likes:
    257
    Western US
    I could make this same argument word for word concerning "advocacy/enablers" over the past decade.
     
  5. I'd like to know more about the CDC researchers' article stating 29% of PWCs have "a personality disorder." Is anyone familiar with the article? Imagine if we had psych degrees, what we would diagnose THEM with!
     
  6. Found it

    I found it--
    http://www.prohealth.com/library/showarticle.cfm?libid=15783

    Good debunking in the article.
     
  7. Leslie

    Leslie

    Messages:
    29
    Likes:
    1
    California
    Just to give a quick response to the comments and articles....I really need to reread the article again, as well as comments....I have had a "crash" now for weeks, which is a problem for all of us? That is again, something others don't understand.

    As for research, as a nurse, for a while I worked at a university hospital and worked in research programs, basically doing phase 3. What I found out, which tainted me a bit, was that the Drs./professors do the research for several reason's.
    1. Because they are interested in the disease
    2. Because they need to write a research paper to get a raise
    3. Political
    4. Other.......

    Now, I am not sure how it works with the NIH, but.....I am sure that it is as political as the universities in the research they do. No conclusive results that make sense to the ones who decide where the money goes, no money. That is my guess, but it makes sense to me. To fund a study I had to go before a board and present the study, and it had to make sense to a board of Dr.'s that are clueless to the disease I was studying. (Hep C at that time)
    So, my quick response to the article and comments....back to re-reading.........:D
     
  8. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    Cort wrote in his letter to Amy Dockser Marcus:

    After decades of being CFS sick, I've lost the ability to express outrage and anger, yet I feel it. Cort, thank you for speaking to Amy in a voice that represents how many of us feel.

    Have also lost the hopefulness of many CFIDS patients who have "only" been sick a few years..."The answer is just around the corner" belief. We need your hope as well!

    Floydguy commented:
    I agree.

    I believe the CDC and the NIH have multiple reasons not to want to find this virus. Proof of XMRV in CFS patients will break the back of social security and burden Medicare beyond imagination.

    CFS and all of us as patients have been drug through the mud by the media, health-care providers, and most certainly by the CDC and NIH....For decades.

    While I'm cautiously optimistic that XMRV will turn out to be the needle in the haystack...my mind thinks back to when HHV6 made headlines, and we all thought 'this is it." Obviously the stakes on XMVR are far higher.

    One last thought I want to share about retroviruses. I remember in the late 1980's or early 90's Dr. Cheney said this to me, and I'll paraphrase...

    HIV should not be able to do to the immune system what we see it doing. I believe that HIV patients have a second unknown virus and those two viruses in tandem can do the damage we're attributing to HIV. I think that second virus is what causes CFS.

    Have never forgotten that. It's an educated and interesting theory.

    Again, Cort thank you for expressing yourself to Amy Dockser Marcus and saying what I feel. And to those who express great hope, thank you for that as well.

    Best to all with CFS/ME...
     

See more popular forum discussions.

Share This Page