Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Which ME/CFS research studies would you like to see done if money were no object?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, May 9, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Assume CCC, double blinded placebo, broad demographic sampling, significant numbers of participants, clinical / laboratory / subjective markers, appropriate end points, peer review, and well trained researchers.

    Mine would include
    • Trials of SVF stem cells, various interferons and interferon inducers, Ampligen (competently run), Tenofovir, Vistide, HSCT, Rapamune, daily IV saline, young blood transfusions, plasmapheresis, mold avoidance, FMTs, Freddd's protocol, ketogenic diet, Desmopressin, Mestinon, amino acid therapy, neurofeedback, DADA / DCA, and all of Jay Goldstein's treatments
     
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  2. adreno

    adreno PR activist

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    I would be happy just with Lipkin's and Davis' work being funded
     
  3. Cinders66

    Cinders66 Senior Member

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    HRV sleep research and trying to understanding why the body doesn't restore itself in sleep ( an essential part of health)
    Severe ME research, especially in the area of vastly reduced brain functioning and energy production and the peculiar sensitivities - why the light sensitivity etc - requiring imaging and probably inpatient facilities
    Imaging research to establish issues such as brain circulation deficits, matter atrophy or functioning and connection and signalling deficits
    Mitochondria and energy generation research and what's blocking it
    Neuro Inflammation explored further and drugs to treat it
    Autonomic dysfunction
    Further research in the abnormal response of muscles to activity
    Much done to effectively subgroup
    explore and define PEM and how it Is experienced differently in CFS vs ME vs severe ME
    Vagus nerve infection & Explore the possibilities of infection of the CNS
    More spinal fluid research to find biomarkers
    Gut research - dysbiosis, leaky gut, relation to exertion
    Getting exercise harm -exacerbation proved e.g. with VO2 testing etc and prove its not just that it's deconditioning and compare/contrast with other similar illness e.g. MS, sjogrens.
    Post mortem research to establish or not neurological issues in the severe
    More research of the type the Australians are doing which is very complicated involving IONs and receptors and other stuff beyond me. Probably complex stuff on genes and gene expression, again beyond me.
    Establish more on immunity and auto immunity and how it reacts to exertion

    Treatment explored as we go along to relieve suffering asap including b12, ampligen, saline, immune drugs, nimodipine


    Lots of the above done in studies large enough to include other other groups for contrast e.g. Deconditioned and other illness so we can start to isolate the unique factors of ME and stop having interesting findings such as NK cells being dismissed as non specific or possibly stress related or too small size to be certain etc.

    I'm quite impressed that I wrote that in 14 minutes when the UK ME MRC expert group took between 2008 and 2011 and workshops etc to do similar and still left out the severe.
     
    Last edited: May 9, 2017
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  4. ChrisD

    ChrisD Senior Member

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    For me it has to be anything Microbiome related as surely everything else is secondary to that. Unless we shouldn't intervene with our microbiomes too much?! FMT would be a novel trial. It would also be great to see a lot of the common alternative treatments tested, such as IV Vitamin C, Lipid exchange therapy and other mitochondrial treatments
     
  5. Wishful

    Wishful Senior Member

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    I'd like more research into the mitochondrial aspects. I'm convinced that my microglial mitochondria are responsible for the symptoms. More specifically, I'd like research into peroxynitrite levels in the microglial cells, since peroxynitrite scavengers greatly increase the severity of my symptoms. Problems with cerebral mitochondria wouldn't necessarily show up elsewhere in the body, since there are genetic differences between them. That might actually help narrow down where to look for the problem.

    I think that the research into immune system triggers (viruses, immunosuppressants, etc) won't help, since the problem remains after the trigger has gone. Likewise, I think that muscle activity is just another immune system trigger, so that won't lead to a treatment either.

    A list of 'what areas of research do you think resources are being wasted on?' might be interesting.
     
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  6. Alvin2

    Alvin2 If humans were rational...

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    PACE is a huge waste of money in the wrong direction. Imagine they had to repay their fraudulently wasted money (including the subsequent court costs) and it was redirected to better research.
    Frankly we should make sure Dr Davis is well funded
     
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  7. A.B.

    A.B. Senior Member

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    The moonshot:

    Load the entire BPS establishment onto a rocket and shoot them to the moon. I think it will accelerate research greatly within a few years. :D
     
  8. A.B.

    A.B. Senior Member

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    On a more serious note I think merely trying to replicate all the older studies that reported something interesting but were then forgotten could pay off.

    I would also run multiple massive omics projects in parallel in different places in the world.
     
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  9. AlwaysTired

    AlwaysTired

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    I don't know what BPS stands for, but I like the spirit of this comment
     

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