Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

Discussion in 'Latest ME/CFS Research' started by AndyPR, Oct 7, 2017.

  1. AndyPR

    AndyPR Senior Member

    Announcement from Columbia.
    https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative


    Announcement from the NIH (covering all 3 research centres and the data centre).
    https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research

    Announcement from the Microbe Discovery Project.
    http://microbediscovery.org/2017/09...centers-data-management-center-announcements/
     
  2. AndyPR

    AndyPR Senior Member

    Coverage from Simmaron.
    http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/
     
    jpcv, simeyss, Groggy Doggy and 8 others like this.
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,741
    Likes:
    4,385
    Southern California
    Thanks @AndyPR

    Just read this from the Monster Study page

    Very encouraging, hope that this gets priority with the new funding. Would be great to see Cosentyx or Actemra trialed
     
    Last edited: Oct 7, 2017
    anni66, jpcv, simeyss and 7 others like this.
  4. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    This is somehow reminding me of throwing immune modulators at what might be persistent Lyme instead of abx. It harkens back to whether Mark Davis is right about not just ME/CFS, but Lyme.

    Good motive, scary treatment if they get the diagnosis wrong.

    Some might argue that it would be wise to first demonstrate conclusively that no pathogen(s) is involved before lobbing fixes our way.

    I well know how desperate we are.
     
    Last edited: Oct 7, 2017
    simeyss and Art Vandelay like this.
  5. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    It's worth reading the full write up by Simmaron.
     
    Learner1, simeyss, AndyPR and 2 others like this.
  6. Forbin

    Forbin Senior Member

    Messages:
    960
    Likes:
    4,027
    Like this:
    And this concerning one of my favorite suspects...
     
    ScottTriGuy, Solstice, AndyPR and 2 others like this.
  7. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    And this:
     
    Gemini, ballard, Learner1 and 6 others like this.
  8. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    Topic-heavy, detail-light, IMHO.

    I am concerned by these inclinations toward autoimmune explanations when active infections have not been ruled out.

    I have said before I am not certain that Mark Davis and friends have ever conclusively demonstrated autoimmune agents are at the root of chronic Lyme. I appreciate that is a popular explanation, but until persistent Bb - or any other pathogen - can conclusively be excluded from consideration, then, potentially, at least - we are just compounding one mistake on a series of others.

    Feel free to substitute enteroviruses or herpes or parvoviruses or whatever for Lyme. I still subscribe to the idea that the simpler explanation should be the preferred, at least foundationally, and an infectious agent satisfies Occam's razor pretty well, even in 2017.
     
    halcyon, Learner1 and msf like this.
  9. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    I think this involves the Tru Culture study and also includes looking at bacteria, contaminants, toxins and even airborne ones among other things. They can expose cells to many different variants in incubator tubes to see how they react. If this link takes you to the right place - Mady Hornig talks about it in a FB live recording on Simmaron FB from 1:06:00 minutes here: https://www.facebook.com/SimmaronResearch/videos/1691287094236773/
    The Tru Culture study could possibly produce very interesting results.
     
    Last edited: Oct 8, 2017
    AndyPR likes this.
  10. drewmaster

    drewmaster

    Messages:
    80
    Likes:
    161
    In December of 2015, Dr Lipkin said, "We’re going to solve this in three to five years, provided the resources are made available”.

    Well, now he has the resources ... or at least a big chunk of them! He is a brilliant researcher and we are fortunate to have him so committed to solving this wretched disorder.
     
    Last edited: Oct 7, 2017
    ballard, AndyPR and aimossy like this.
  11. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    Not enough resources though. We need all the centers funded properly, and more centers as well as hundreds of extramural grants funded. Edit: In my opinion in the big picture that is..
     
    Last edited: Oct 7, 2017
    simeyss, BurnA and AndyPR like this.
  12. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,741
    Likes:
    4,385
    Southern California
    I may have missed this, but do we know if tissue is being tested as well?
     
    Learner1 likes this.
  13. AndyPR

    AndyPR Senior Member

    I think this is the video? https://www.facebook.com/SimmaronResearch/videos/1691287094236773/
     
    aimossy likes this.
  14. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    Thanks so much @AndyPR I have edited with your correct link!
     
    AndyPR likes this.
  15. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    I haven't seen Lipkin or Hornig mention that they would use tissue sampling in any study yet.
     
  16. leokitten

    leokitten Senior Member

    Messages:
    589
    Likes:
    1,887
    Maryland
    IMO I don't think Lipkin's work is that compelling and I do not believe they will find much of anything that is actionable. The Microbe Discovery Project is interesting work from a research perspective but I highly doubt it will lead to absolutely anything actionable.

    What important work has Lipkin published on ME/CFS in the last 5 or more years? Really nothing other than the cytokine work. Hornig and Lipkin's paper on cytokines was interesting but only somewhat validated what we already knew, nothing new and nothing that we could do anything with. Just like with the cytokine study, searching in our microbiome for abnormalities will not really lead to any treatment, it will just be somewhat interesting research to gain some knowledge and that's that.

    I believe only two groups, Fluge/Mella and Davis/Naviaux, are looking directly at what is causing the key debilitating symptoms of this disease and have hypotheses that will lead to actionable knowledge and treatments within the next 5 years. It's a total shame that they didn't get funded by NIH and Lipkin did.
     
    *GG* and ivorin like this.

See more popular forum discussions.

Share This Page