Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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OMF progress

Discussion in 'Active Clinical Studies' started by neweimear, Oct 25, 2017.

  1. neweimear

    neweimear Senior Member

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    Is it just me and my desperation/impatience but is anyone feeling that progress from OMF is a bit slow. I know they are doing their best but I wonder if all the metabolomics and analysis of metabolites in each patient is actually going anywhere. It sounds like it could be going towards personalised medicine which is too big a leap right now. I would prefer to hear how many fda approved drugs they have tested and how that is going. I'm starting to feel reluctant to keep pouring my money into them. Maybe that is lousy to say and I am not seeing wood from the trees.
     
    gretac and bspg like this.
  2. TenuousGrip

    TenuousGrip Senior Member

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    I was going to raise the point about The One Thing About This Disease That Isn't Incredibly Frustrating.

    But I couldn't come up with one :-(

    Waiting is a bit of an intolerable misery isn't it ?

    I often say around here -- and I mean it with deadly sincerity -- that I get by:

    One day at a time
    One hour at a time
    One minute at a time
    One second at a time

    It's the only thing that allows me to claim my ... er ... tenuous grip. When life and my head drag me into thinking about the future ... things get very black.

    All the best .....
     
  3. neweimear

    neweimear Senior Member

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    I totally agree that is the best approach, trying not to think ahead. But my point here is that I have been pumping money into OMF for quite a while and I am starting to wonder should I be sending it elsewhere...e.g. Solve Initiative. I have been fund-raising and also giving a good chunk of my own money...so its about investing in the best place that might get me some answers (eventually)
     
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  4. TenuousGrip

    TenuousGrip Senior Member

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  5. neweimear

    neweimear Senior Member

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  6. PinkPanda

    PinkPanda Senior Member

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    I think it's a good approach to measure a lot of metabolites and get an overview of the metabolism like that. That might be crucial for understanding this disease. In my opinion that should be done more in other diseases, too.
    Also, research is usually slow, but the OMF is already doing a lot to speed the process up, 'fast-tracking' the research.
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    I hear the concerns

    Biomedical progress can be agonizingly slow, even with a team focused on fast results. I think they've made significant progress with the speciality drug assay and impedance meter. Given how focused they are on implementing new technology and drawing on multidisciplinary perspectives, as well Dr Davis' personal stake, I can't think of a better bet for faster progress.
     
  8. neweimear

    neweimear Senior Member

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    I know Dr.Davis is going to do a video clip before December, hopefully that will have some decent updates and indications of where we are going.
     
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  9. neweimear

    neweimear Senior Member

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    Yet, it seems to be immune modulating drugs that have shown promise so far...ritux, cyclophosphamide, ampligen. Glad to see Mark Davis looking at immune system.
     
  10. Diwi9

    Diwi9 Senior Member

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    My biggest concern is that they are using samples from the severely ill. This is great, because those are the people who need the most help. However, if ME/CFS is a heterogenous disease, I'm unsure how much of their work will translate. Still, everyone needs to start somewhere and the severely ill have been almost entirely ignored by the research community.
     
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  11. Alvin2

    Alvin2 If humans were rational...

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    I've wondered what they are doing day to day (and have asked to no reply). From Dr Davis money pleas i suspect the biggest issue is they can't do their daily work or run tests at full speed, only at the speed of money coming in to pay for it :bang-head:
     
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  12. geraldt52

    geraldt52 Senior Member

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    I don't think anyone, including the researchers, is in a position to judge that. Research progress, in any field, is not "linear", and by its nature not predictable. What may appear to be no progress at all for months or years, can suddenly become incredible progress, after one single missing piece is added to the puzzle.

    I have the greatest confidence in OMF and I'm quite sure that given his entire situation Dr. Davis is managing the work as efficiently as he is able. I don't think it is wrong to spread the money around, as no one can predict who might be on the right track and who might be on the wrong track...but, I think OMF is definitely worthy of being included in the mix.
     
  13. CJB

    CJB Senior Member

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    We need a moon shot and IMHO, OMF is in the best position to get us there. :rocket:
     
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  14. ErdemX

    ErdemX Senior Member

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    I think they are just amazing and I am grateful for their hard work. I believe their efforts will make a huge difference for us.
     
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  15. Nickster

    Nickster Senior Member

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    It's hard we all want progress. I know that I am impatient. Dr. Mario R. Capecchi from the symposium said a comment that has stuck with me:

    "We tend to overestimate the short term, but, underestimate the long term."

    I am hopeful that OMF will get there!
     
    Last edited: Oct 25, 2017
  16. Mary

    Mary Senior Member

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    From what I understand (which admittedly is not a lot! :eek:), their nano device shows the same signature in persons with ME/CFS, regardless of the degree of severity. Persons with very mild ME/CFS have the same whatever it is they have measured that Whitney has. So although ME/CFS appears to be heterogenous, there may be a common underlying something in all of us - that's the best I can put it! :sluggish:

    So I don't think it's a huge step to posit that their discoveries could very well help all of us, regardless of how sick we are.
     
  17. Webdog

    Webdog Senior Member

    OMF is starting up another patient study. I have my first appointment and give blood at Stanford in about 10 days.

    I'm moderate ME/CFS. So it's not just severe patients now.

    PS: Thanks @neweimear for helping make this study possible.
     
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  18. Diwi9

    Diwi9 Senior Member

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    I agree in general, but still reserve some skepticism. It's good to know they will be expanding their research pool. At this point, I've donated more to OMF than any other organization. Publication or at least updates on research progress on their website would firm up my confidence.
     
    Mary likes this.
  19. Murph

    Murph :)

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    I'm sure they're working their butts off, but just not talking about it. I want more communications from OMF.

    If you put Open in the name of the organisation, run on donations, and promise not to publish in official journals, it's fair that expectations for communication are an order of magnitude higher than for other researchers. They have a monthly newsletter but it's far from a candid look at what's going on researchwise. More of a call for donations. SMCI is good with scientific comms and they could replicate that.

    Ron doesn't have to be the only spokesperson and I don't even necessarily need to hear results (I know they plan to share data with other researchers thru their research portal). I'd just like to hear what's underway and gets regular updates on timelines. What little things are going on? Who's hired and fired; who's meeting who; how many peopel came in for a blood draw; what sort of test tubes got delivered from Thermo Fisher and why; did Bob Naviaux email thru an interesting paper he saw; Does Wenzhong Xiao now have to rent an extra ten terabytes of data storage; which staff member is having a birthday? All these little things help make us feel like we see inside the organisation we're funding.

    Perhaps give someone who works there permission to run an Instagram account where they take shots and chat to staff on what theyr'e up to...
     
    Last edited: Oct 25, 2017
  20. bspg

    bspg Plant Queen

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    I think there's a few things making it feel slow:

    1. We're severely (40+ years) behind on research already
    2. We are (as patients) following the research very closely, so it seems like it's taking forever. Think: 'a watched pot never boils'.
    3. OMF/Dr. Davis were putting out update videos regularly for a minute and then stopped. I've been wondering if/when they're going to do another one.
    4. When you can't do anything because you've got ME/CFS, you have very little to distract you from the fact that you're still (always and forever) sick.
    Also, @Diwi9, I remember Dr. Davis saying the reason they started w/severely ill was because whatever the problem is in ME/CFS, it'll probably be the most amplified in the sickest patients. i.e. it'll stand out more and be easier to see.
     

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