The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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List of Tests for End ME/CFS Project's Big Data Study - Phase 1

Discussion in 'Latest ME/CFS Research' started by Bob, Apr 6, 2016.

  1. Bob

    Bob

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    List of Tests - End ME/CFS Project's Big Data Study - Phase 1

    I haven't seen this info before, so it might be new. Even if it's not new its worth another look.

    It's a huge list of the tests that the Open Medicine Institute is doing for Phase 1 of the the big data study, for severely ill patients.

    It's an AMAZING list! Have a look...

    http://www.openmedicinefoundation.org/phase-i-list-of-tests/


    Edit: They also list some of the labs that they'll be using for the tests.
     
    Last edited: Apr 7, 2016
    Mary, helen1, daisybell and 18 others like this.
  2. msf

    msf Senior Member

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    Interesting, a Lyme antigen test along with the antibody one.

    I have a question though: where is the test that can discover whether someone was ever looked at funny by their primary school teacher even though they repeatedly deny any recollection of such an incident?
     
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  3. John Mac

    John Mac Senior Member

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    I like the fact that at the very end of the list is Questionaires SF-36. The one and only test psychiatrists would bother doing, and never on these severely ill patients.
     
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  4. msf

    msf Senior Member

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    Also a test from the lab that is apparently ┬┤the best in Bartonella testing┬┤ - although I would imagine that this is a rather small field.
     
  5. Gemini

    Gemini Senior Member

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    Impressive!

    Hope they run the entire list on a "constant" cohort to get an "integrated systems" view of the big data.

    Looking forward to the results!
     
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  6. Forbin

    Forbin Senior Member

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    I noticed "Mycotoxins by Magarray."

    At first, I thought that Magarray was someone's name, but MagArray Inc. is a company that uses magnetically nanotag-labeled antibodies to scan samples for target proteins.

    Their magneto-nano sensor technology was developed at Stanford under Federal funding.

    http://www.magarray.com/Firm-Overview.shtml
     
    Last edited: Apr 7, 2016
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Glad they are testing for mycotoxins as this often gets overlooked.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Does anyone know which auto-antibody panel they will be running? Is it the PAVAL panel from Mayo Clinic or something else? I'd assume it would be something pretty thorough.
     
  9. SB_1108

    SB_1108 Senior Member

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    I found heavy metal testing through hair analysis more reliable than the blood/urine tests. I know hair is subject to contaminants but I personally think that it should have been included based on that experience. Its not expensive so it wouldn't be cost prohibitive. Regardless, I assume they will eventually determine that heavy metals are not the cause - just a secondary effect of the disease.
     
  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    i wished they would do bone marrow testing..
     
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  11. Kati

    Kati Patient in training

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    What would you like tested on the bone marrow, @Marky90? Typically one would see hematopoietic cells in the bone marrow. It might be interesting to see if there is viruses in there. Am I missing anything?

    I would suspect that invasive type of procedure require a different level of ethics and internal review board approval. Moreover since this is a very severe study, it may not be possible to perform the procedure on the patients, or it may set them back greatly.
     
  12. Deltrus

    Deltrus Senior Member

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    I bet CFS will have a lot of secondary damage from methylation / nutrition blockades. Ie low zinc/potassium/magnesium/b vitamins in cells that cannot be tested for -> low enzymes and cell proliferation -> widespread dysfunction.

    This will serve as a fog that will be hard to see past. There will be a lot of dysfunction but we need to find the start of it all, the things which keep the cycle stuck.

    Viruses and immune function will be the most important part, as almost certainly there will be a few viruses that are root factors in CFS.
     
    Last edited: Apr 7, 2016
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  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I would be interested in the marrow phenotype.. For example: in my marrow there were some abnormal precursor cells, more t-cells than usal and so on. This stuff is common in MDS, but as the doctors are quite sure i dont have that, it might be that the marrows function is disturbed by autoimmunity. They have found similar abnormalities in Lupus. http://www.lupusresearch.org/news-and-events/lupus-news/bone-marrow-abnormalities.html

    I think i actually read that quite a few lupus-patients go on to develop MDS, because of the damage to the marrow.

    With local sedation, bone marrow biopsies are not too bad, but its quite uncomfortable. If you`re severe with strong PEM, it`s probably not warranted.
     
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  14. rosie26

    rosie26 Senior Member

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    I had a lot of problems with my teeth. No matter how much good food I ate or the cleaning of them, seemed not to solve the problem. I also was in a study as a control for 4 years and part of the study required that I had a yearly bone density scan done. I was stunned and perplexed that my bone density was not as it should be - I knew something wasn't right.

    This was about 20 years ago and I know now that I was in the very early stages of ME but the illness was obviously undoing me even then. So, I think also there are major disruptions in the mineral and vitamin regulations.
     
  15. JAH

    JAH Senior Member

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    They don't want to do bone marrow because they are trying not to be so invasive on severely ill people.

    You can look for infection in bone marrow.

    JAH
     
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  16. John Mac

    John Mac Senior Member

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    Received a latest news email from OMF today:

    Momentum Continuing- $350K received!
    [​IMG]
    Now that the Severely Ill-BIG DATA Study is underway, we want to perform multiple investigations at the same time. So, we are continuing the momentum. Just this week, we gratefully received $350K from an anonymous donor who had previously donated $40K as well as many additional donations from our supporters.Let's do this!
     
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  17. BurnA

    BurnA Senior Member

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    I wonder if they could use this money to collaborate with the NIH? Or do we know what it's earmarked for ?
     
  18. Daisymay

    Daisymay Senior Member

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    I think I prefer them to work independently on their own, move things forward, find things out, share data and then collaboration can come. I'd rather they were able to work in an unfettered way.
     
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  19. BurnA

    BurnA Senior Member

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    Absolutely unfettered. But my understanding was that the OMF expressed interest in using the same cohort as the NIH for some of their studies.
     
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  20. Daisymay

    Daisymay Senior Member

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    I like the idea of the amazing sounding OMF expert panel being able to brainstorm ideas unhindered by NIH beaurocracy and politics, so personally I think they really need to maintain their independence or only work together in a limited way.
     
    Amaya2014 and mango like this.

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