1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. Nielk

    Nielk

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    There is a category on that NIH funding table per disease for "Emerging Infectious Disease" with over 2 billion dollars funded! Can't we get part of that pie?
    beaker, Purple, SOC and 2 others like this.
  2. Kati

    Kati Patient in training

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    I would suspect prt of that pie went to the Middle East Respiratory Distress Syndrome research, because see, it becomes a global threat if not treated. I wonder how many millions it cost.
  3. Nielk

    Nielk

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    Maybe the trick is knowing how to apply and under what category. maybe our money would be better spent in hiring a professional who understands how the system works to apply for NIH grants.
    WillowJ likes this.
  4. readyforlife

    readyforlife Senior Member

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    So much money is being spent right now on different research projects for CFS/ME. I wish they would all come together and focus on one thing at a time. I know we shouldn't have all of our eggs in one basket, but if the best researchers could come together and agree yes lets look at the microbiome or what ever other area they think might be the problem. We have so many great researchers that are asking for donations but it spreads our money thin. We need to focus on one area and send our money to them. below is a small list of cfs/me researchers who need money for their work. But who is doing the best research and where is our money being spent with the biggest inpact?

    http://wpinstitute.org/, http://simmaronresearch.com/, http://www.nova.edu/nim/, http://chronicfatigue.stanford.edu/, http://cii.columbia.edu/default.aspx ETC...
  5. Andrew

    Andrew Senior Member

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    The NIH claims that the reason they fund so little is because so few people are applying, but apparently Lipkin is not finding that to be the case when he applies.
    snowathlete, aimossy, justy and 3 others like this.
  6. readyforlife

    readyforlife Senior Member

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    Are you suggesting that Lipkin has applied for grants for the microbiome study and has been denied?
    vli likes this.
  7. currer

    currer Senior Member

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  8. Dolphin

    Dolphin Senior Member

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    I wonder would the CFI set up a restricted fund for Lipkin research that people could donate to?
    Svenja, WillowJ, aimossy and 2 others like this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know how this could work, but hasn't Dr. Enlander been doing 2 day exercise tests and a fairly large group of patients and funded by a grant? Is there anyway his results could be used--especially if he was funded by a government grant?

    Nielk, do you know his source of funding?

    Sushi
  10. Sasha

    Sasha Fine, thank you

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    I think that could be a good idea.
    justy and vli like this.
  11. Ember

    Ember Senior Member

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    Dr. Unger has thumbed her nose at us. It took her over ten days to deliver her August 30 denial to advocates, and it will likely take her over four more weeks to post a synopsis of her taped comments. She writes about the need “not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.” Yet, as Dr. Snell points out, her multi-site study design “does nothing to validate the diagnostic value of repeated CPET testing.”

    In the context of the complete devastation of ME, Dr. Unger should spare us her solicitude over the hardship of “an additional overnight stay for those patients who travel long distances to attend clinic.” Dr. Unger is selling us short.
    Iquitos and Kati like this.
  12. Nielk

    Nielk

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    Dr. Enlander's study is privately funded. One of his patients donated one million dollars for this project.
    He does not do a two day excercise test though. It is a one day test with three consecutive days of the patient coming back for blood draw.
  13. Snow Leopard

    Snow Leopard Senior Member

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    Chicken and egg. Better definitions come from more people being involved and more eyes on the ball. Plus it won't be about definitions if we have specific biomarkers for specific groups..

    The definition issue isn't going to solve itself while the community is so divided, but an RFA can help right now.

    We need to push for an RFA for studies like those proposed by Lipkin to get funding. The justfication is the lack of ongoing research capacity and funding, which is linked to CFS being the single most neglected disease in terms of disease burden vs NIH funding. It is still neglected by an order of magnitude compared to almost every other category even if you assume a prevalence as low as 0.1%.

    I propose something like a petition at change.org, it could work if there is a uniting of the international community on this issue, similar to the support gained for the Rituximab study in Norway.
    WillowJ, vli and Iquitos like this.
  14. Sasha

    Sasha Fine, thank you

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    Wasn't the Lights' study that? Single exercise challenge then repeated blood draws? Spectacular results.

    Nielk - maybe Dr Snell could help with your idea about getting the names of patients willing to do the two-day test and could consult on whether it's desirable to do that in a self-selected subgroup. That could be a workable compromise but he's maybe the best judge of whether it would do the job.
  15. Sasha

    Sasha Fine, thank you

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    Nielk likes this.
  16. Ember

    Ember Senior Member

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    A recording of Dr. Lipkin's talk has been posted here.
    leela and heapsreal like this.
  17. Otis

    Otis Señor Mumbler

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    Thanks for the repost of the blog link Sasha. On the blog comments 'Maxine' points out that she would probably have PEM/PENE just from the trip preparation and travel. Therefore the first day might not be a true baseline. For a one day test the results might reflect a better PEM picture - albeit not all associated with the test. But that for a two day test, measuring the difference between day 1 and 2 would likely result in a diminished drop-off in the data collected (which, by the way, is far more than AT) because day one was collected in a PEM state

    I think this brings up an interesting topic. How much rest is required to bring a patient to a valid baseline? I wonder if Snell/Stevens have considered this. Any patients of theirs out there. I got the impression from Jennie she might have traveled to Stockton.
    Sasha likes this.
  18. Iquitos

    Iquitos Senior Member

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    The volume is too faint to hear.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    With headphones it is still very low volume, but understandable.

    Sushi
    leela and Dolphin like this.
  20. Bob

    Bob

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    snowathlete, justy and Sasha like this.

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