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The End ME/CFS Project: History Taking Root

Discussion in 'Phoenix Rising Articles' started by ClarkEllis, May 6, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Bump!

    Feed the boffins! :nerd::nerd::nerd::nerd::nerd:
     
  2. beaker

    beaker ME/cfs 1986

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    Donation done. Made it in honor of ME/cfs patients surviving everywhere : Keep On !!
    Cause we all deserve recognition for the huge effort needed to live with this plague.
     
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  3. dannybex

    dannybex Senior Member

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    Yes, I hope so as well, as it seems to be involved in at least a subset of patients.
     
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  4. dannybex

    dannybex Senior Member

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    From an old facebook post, apparently they did explore a possible mold connection, and I'm assuming, ruled it out.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    I do not believe they have ruled out mold and are still looking at all pathogens. My doctor told me that there are many paths that get us to the same endpoint of ME/CFS like many trains that meet at the same train station. I suspect the Severely Ill Patient Study will look at everything humanly possible.
     
    dannybex likes this.
  6. ClarkEllis

    ClarkEllis

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    Nothing is off the table, that's for sure. And they will explore every and all avenues if needs be. Many of the technologies being talked about are able to look at a wide range of things too, so if mold is a problem that ought to be picked up by their studies I should think.
     
    Roy S and Gingergrrl like this.
  7. dannybex

    dannybex Senior Member

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    I agree completely. I was just saying it seemed like they had ruled mold in Whitney's case.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I totally misunderstood and thought you meant they ruled out mold in general as a causative factor in CFS. I didn't realize you were talking about Whitney's case.
     
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  9. Simon

    Simon

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    Reasons to donate to End ME/CFS Project's Severely Ill 'Big Data' study

    ME Awareness Day seems a good time focus on End ME/CFS' Project's main study, which harnesses some extraordinary science to try to nail some affordable and useable biomarkers:
    [​IMG]
    The big problem is not knowing what the best biomarker will be - people have tried without success yet for decades (Lipkin & Hornig may be closing in with a cytokine panel) - so their answer is to look at what seems like everything. They are throwing the kitchen sink at the problem, albeit a very high tech one.

    One strong possiblility is that a characteristic set of biomarkers will succeed where single biomarkers have failed, and looking at dozens of biomarkers at the same time in the same patients. The work may even identify unique clusters of patients, perhaps with different underlying disease mechanisms than can be targeted with different treatments.

    Here's a run down of some of the many things the study will look at. Nothing on this scale has ever been done before in ME/CFS.

    Genomics
    • Whole genome analysis (yup sequencing the entire genome). looking for what might be different in mecfs patients. For good measure they are doing this in saliva as well as blood (presumably as saliva is easier to collect from the housebound: 'spit and mail', if the results are good enough)
    • Epigenetics, looking for unusual DNA methylation patterns (a form of long-term gene regulation)
    • Mitochondrial genome analysis
    • Gut microbiome (via analysis of DNA in faeces)
    Which would be a lot in itself, but there's plenty more too:
    • Metabalomics in blood, saliva and urine. This looks at metabolites, 'chemical clues in the blood', small molecules like tryptophan and serotonin that gives a window on what's go on, or wrong, with the body's metabolism.
    • Pathogen hunt in blood, saliva, faeces and urine.
    • Isolating and identifying all the different types of immune cells, including Natural Killer subtypes
    • Cytokine levels
    • Gene expression and activity levels of Natural Killer cells, and obvious target given the repeated findings of reduced NK activity levels in patients. Actually, they plan to look at gene expression for other immune cells too.
    Zooming in on the immune system
    This is where they go way off-piste.
    • "Immune repetoire": you know how we can make oodles of different antibodies, which is what gives us the power to fight off so many infections? It's the same story with T cell receptors, and the immune repetoire basically catalogues all the different antibody and T cell receptors in circulation - which is a big number. This could, for instance, indentify past infections (by identifyng the antibodies that bind particular pathogens). It's a bit mind-blowing, really.
    • Sequencing HLA genes. HLA proteins present antigen to T cells and play a critical role in the immune system. HLA mutations have been implicated in both vulnerability to particular pathogens and to autoimmune disease, both potentiall relevant in ME/CFS. (One HLA variant protects against HIV infection but is a risk factor for the autoimmune disease ankylosing spondylitis). More about the role of HLA in the immune system. For boring technical reasons HLA genes are very hard to sequence so are usually ommitted from genome analyses and they need to be analysed separately.
    • Sequencing Natural Killer cell Immunoglobulin Receptor genes, 'killer receptor'. Like HLA genes, these can have a key role too, but I won't go into the details.

    More unusual stuff
    • Real time analysis of sweat by wearable electronics (iSweat device??), including salt levelsl and cytokines. I had no idea this was possible.
    • Analysing levels of copper and other metals in blood and urine
      Yup, that's in too (mycotoxins is the jargon for this): they are looking in blood, saliva, urine and poop.
    Actually, even that's not all of it but it gives you a good idea of the scale and ambition of this project.


    What you get for the money
    This comprehensive approach costs $25,000 a patient, so the initial $1 million goal will cover 40 patients. Luckily the team already have good data on controls (presumably from earlier work using the same high-tech kit) which means donors' money will go further.

    There's more: the team will release the Big Data set to the research community, allowing other scientists to make further discoveries using this unprecedented combination of molecular and clinical data.

    What are you waiting for :)? » ME/CFS Severely Ill, Big Data Study


    :thumbsup:

    Thanks to Linda Tannenbaum for answering some questions on this yesterday - and of course to Clark Ellis for his blog.
     
    Last edited: May 15, 2015
    GaryK, beaker, lycaena and 10 others like this.
  10. aimossy

    aimossy Senior Member

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    Not waiting - donating to this and Columbia CII - end of story. Thanks for the rundown @Simon
     
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  11. lycaena

    lycaena

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    Last edited: Jul 10, 2015
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  12. Sasha

    Sasha Fine, thank you

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    This is a terrific video - can somebody put a comment on with a link to the END ME/CFS project and asking people to donate? Needs a google account.
     
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  13. Sasha

    Sasha Fine, thank you

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    Argh, just watched it - absolutely heartbreaking...

    I can't stand it that they don't have a donate link! :aghhh:
     
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  14. Bob

    Bob

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  15. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    There are now multiple donation links and some great comments.
     
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  16. Sasha

    Sasha Fine, thank you

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    Great - it was killing me that there weren't any!
     
  17. Sasha

    Sasha Fine, thank you

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    Let's hope they raise that $1m!
     
    beaker, catly, Simon and 7 others like this.
  18. Simon

    Simon

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    OMF's ME/CFS Severely Ill-Big Data Study Explained by Stanford's Brian Piening, Phd


    Uses methodology published in Cell in 2012:
    Personal Omics Profiling Reveals Dynamic Molecular and Medical Phenotypes: Cell

    Graphical abstract:
    [​IMG]

    Basically looks at each person's unique biomolecule profile and, as Brian Piening explains, the hope is that part of this unique profile is related to disease status, and common features will be found between people with the same disease (mecfs in this case). That would reveal clues to chase down.
     
    Sidereal, beaker, Gingergrrl and 8 others like this.
  19. Sasha

    Sasha Fine, thank you

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    Nice to see them putting a little video out - people like that and it's good for fundraising.
     
    Gingergrrl, Scarecrow and Bob like this.
  20. Jo Best

    Jo Best Senior Member

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    Excited to see that Ron Davis is the first in the line-up to take part in the Invest in ME Conference 2016 (IIMEC11) & Biomedical Researchers into ME Colloquium (BRMEC6) - http://investinme.eu/IIMEC11-news.shtml

    Linda Tannenbaum's pre-conference dinner speech is on the 2013 IIMEC8 DVD - http://investinme.eu/IIMEC8.shtml#dvd and there's a transcript on Christopher Cairns Patient Advocate blog - http://cfspatientadvocate.blogspot.com.es/2013/05/linda-tannenbaum-at-investinme-2013.html

    Great article Clark - thank you.
     
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