Solve ME/CFS webinar with Maureen Hanson Sept.1

Discussion in 'ME/CFS and FM News' started by bobby, Aug 19, 2016.

  1. bobby

    bobby Well-Known Member

    looks like the first day of September is going to be a busy day!

    register here: http://bit.ly/2ayNg0k
     
    Who Me? likes this.
  2. bobby

    bobby Well-Known Member

    @Who Me? well... they are both (hanson and younger) at the same time so we'll all have to arrange who listens in on which and then report back?
     
  3. bobby

    bobby Well-Known Member

    I posted this about Hanson so that everyone would know and someone else (less brainfogged than me) would report back. So it seems like we got it all covered! ;)
     
    Who Me? likes this.
  4. bobby

    bobby Well-Known Member

    Looks like our prayers were answered: Jarred Younger's Q&A got moved to one day later: September 2nd. So we'll be able to listen in on both if we want!
     
    Lissa likes this.
  5. bobby

    bobby Well-Known Member

    bumping this - webinar is tomorrow!!
     
    Merry likes this.
  6. bobby

    bobby Well-Known Member

    I wasn't sure if I was going to be able to listen in, but I did. it was very interesting!! I saved a few of the most interesting slides, but am not sure if I'm allowed to post them here? @Cort

    One major thing though... they did a smaller metabolomics study similar to naviaux and very similar results came out of it!!!

    Because of lack of funding (as per usual) they could only study a small cohort (17 patients + 15 controls, or vice versa), only female patients because small cohort. Also smaller number of metabolites. But so just like in the Naviaux study, they found out that we are metabolically in a state of hypometabolism.

    this is starting to look VERY promising...
     
    voner, Anomie, Cort and 1 other person like this.
  7. keepinghopealive

    keepinghopealive Active Member

    That's great to hear, Bobby. What did she say is the connection between hypometabolism and the gut bacteria? And what did she say about treatment?
     
  8. bobby

    bobby Well-Known Member

    @keepinghopealive She didn't really say anything about a connection between gut and hypometabolism, as these were two completely different studies she did. The gut one we have all seen already, but the metabolomics one is still under review (waiting for publication). They studied over 300 metabolites and almost every single one of them was lower than controls = hypometabolic state. there was a significant overlap between the naviaux study and the hanson study in terms of specific metabolite shortages.

    Before we know what we can do in order to influence this hypometabolic state we need more and bigger studies. She said it's important to have big cohorts with lots of information on each patient (general extensive blood panels etc), so they can start connecting more dots and get to the bigger picture.

    re: the gut study and if we can do anything in terms of treatment she also said it is hard to say at this point. partially because a lot of the bacteria that we supposedly have a shortage of, science isn't able to produce them yet in the form of some probiotic.

    the only one that she mentioned that we would be able to take was bifidobacteria, but she says there is no way to know if this is beneficial, or could even potentially be harmful. (she mentioned a study on probiotics for Crohn's patients, because they have similar gut bacteria shortages - not all probiotics turned out to be safe, some even harmful, so we should probably be mindful of this before we start randomly trying pro/prebiotics.)
     
    voner likes this.
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That is sooooo cool....

    That can only increase efforts to look more deeply into metabolomics...

    As I noted in the blog - http://www.healthrising.org/blog/20...aviaux-chronic-fatigue-syndrome-core-problem/ - it makes perfect sense to me at least given all the other brain findings, low blood volume, low aerobic capacity, low NK cell functioning that some pretty big hypometabolism (if you can have "big hypo something) is going on.
     
    bobby likes this.
  10. bobby

    bobby Well-Known Member

    it makes a lot of sense to me too! I keep thinking about how this connects to my symptoms and it would explain pretty much everything. (my only hope is that this gets replicated enough soon so that we know for sure. there's nothing worse than getting your hopes up and seeing them smashed time and again...)
     
  11. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    She is really getting around. She's on Simmaron's Board as well. She seems like a really careful researcher and she has a relative with ME/CFS.
     
    voner and Ron like this.
  12. keepinghopealive

    keepinghopealive Active Member

    Awesome! Thank you!!
     
  13. bobby

    bobby Well-Known Member

    A few slides of yesterday's talk, about the findings in the plasma metabolite pilot study:
    replication naviaux0.jpg replication naviaux1.jpg replication naviaux.jpg
     
  14. bobby

    bobby Well-Known Member

    some more info about Hanson's team's future projects (NIH funded):
    gene expr BTNK.jpg mito BTNK.jpg
     
  15. bobby

    bobby Well-Known Member

    a case study following the gut dysbiosis study - two twin brothers, one healthy, one with ME/CFS (diagnosed through VO2max). ME/CFS brother had clearly reduced gut microbiome diversity.
    twins.jpg twins2.jpg
     
  16. bobby

    bobby Well-Known Member

    When the gut dysbiosis study was published, Hanson's team noticed the pictures used in news articles were very inappropriate. She wonders if patient organisations could offer better alternatives.
    inappropriate images.jpg
     
    VLynx likes this.
  17. bobby

    bobby Well-Known Member

    and she ended with some interesting news: Cornell has agreed to open an ME/CFS center for biomed research. Because of the disagreement about the name of the illness, they chose this: Center for Enervating Neuroimmune Disease. (according to the dictionary enervating means 'causing you to feel weak and lacking in energy')
    CENID.jpg
     
  18. bobby

    bobby Well-Known Member

    the whole talk is now available to watch on youtube
     
    Lissa, voner, Cort and 1 other person like this.
  19. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That looks like quite a talk!
     
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