August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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ME/CFS Grand Challenge (MEGA)

Discussion in 'Active Clinical Studies' started by Scarecrow, May 16, 2016.

  1. Comet

    Comet I'm Not Imaginary

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    Yes, but the impression that I am getting from the BPSers is not that they are asking why there is a stigma associated with mental illness, but that we are not willing to roll over and accept the stigma of mental illness. Although I may be misreading your post.
     
  2. Simon

    Simon

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    More on the researchers

    A pretty impressive bunch, in my book. I can't wait to see what they can find out.

    Prof George Davey Smith (Genomics, epidemiology and more - Bristol)

    He's a bit of a science superstar: Read my snappy little blogs about GDS and the whole of the omics field, including how it might apply to MEGA.
    The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference (Pt 1 of 2)
    > The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

    Prof Caroline Relton (Epigenetics, Bristol)
    Not much in her profile, but she was the lead author (GDS was senior author) on some of the most interesting epigenetics papers that are mentioned in the blogs above. I was impressed.
    She wrote this blog
    Epidemiology and epigenetics – a marriage made in heaven? | OUPblog
    Which apart from anything has a great cartoon about over-hyping epigeneticcs


    Prof Chris Ponting, MRC Human Genetics Unit (Genomics ++, Edinburgh)
    So although Chris Ponting is listed under genomics - whose main role has been to link gene variants to disease - his work focuses on trying to move from an association to a causal mechanism, using neat stuff like single-cell transcriptomics (looking at what a single cell does).

    His group also investigate the molecular mechanisms of long noncoding RNAs (lncRNAs) [regulatory RNAs] in modulating mitochondrial function.

    This is his speciality too, which seem more than a little relevant.
    Prof Colin Smith, Genomics (Brighton)
    Not much in his bio (above) but he's a professor of functional genomics so probably similarish to Chris Ponting.

    Dr Warwick Dunn - Metaabolomics -School of Biosciences - University of Birmingham
    Seems to have been one of the driving force behind the £8m Phenome Centre Birmingham. "Phenome" is phenotyping omics, using metabolomics (small molecules produced by cells during normal metabolic processes) to create chemical fingerprints of the body. Nb phenotype covers current status and so varies eg with diseases, as opposed to genotype, which is what you are born with.

    He has some interest in inflammatory disorders
    Tony Bartlett, Somalogics (Proteomics)
    Proteomics is all about measuring proteins, all the 'doing' molecues in the body, from enzymes to receptors to signalling molecules - the building blocks of life. So measuring proteins can provide a lot of clues about what might be going wrong in disease - but it's hard to do, and phenomenally expensive. I think there was an interesting presentation from a Scandanavianat IiME last year (insert details in reply) re mecfs, but again cost was an issue

    SomaLogic's key claim is they make it much more affordable, which means you can do it on much bigger samples and get more reliable info (there are zillions of proteins so you really need big samples to distinguish meaningful differences from a whole load of noise ie random variation).
    SomaLogic | A breakthrough proteomic technology platform

    That'll do for now. I need to eat.
     
    Last edited: May 16, 2016
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  3. Comet

    Comet I'm Not Imaginary

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    https://www.actionforme.org.uk/research/uk-cfsme-collaborative/:

    My bolding

    PACE may be defunct by then, who knows? Then maybe the acronym-ers will have to take a new tack.
     
  4. Comet

    Comet I'm Not Imaginary

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    Good stuff:
    https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/

    https://www.actionforme.org.uk/uploads/pdfs/cmrc-2015-report-george-davey-smith.pdf

    I remember reading your blogs about GDS and being very impressed, @Simon.
    Hopefully my concerns prove irrelevant.
     
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  5. user9876

    user9876 Senior Member

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    I'm wondering how this approach compares to Ron Davis's big data approach - both seem to be measuring a lot of stuff. I know Ron is just looking at severe ME rather than the huge numbers talked about here. There is also the NIH project which I have not read much about which I assume is doing a lot of measurements. @Simon Do you have any ideas how the different approaches compare, overlap and complement each other?
     
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  6. JaimeS

    JaimeS Senior Member

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    ...as commented before, that's the beauty of the psychosomatic idea: nothing, literally nothing can disprove it.

    (...or PROVE it, but that part is often left unmentioned and unexamined.)

    If a scientist finds a biological marker, it's still also psychosomatic. 'Psychological' illness is caused by 'physical / chemical / genetic' problems, except when it comes to the attitude of the practitioner to the patient (and treatment options!)

    In that case, talk therapy is enough, because the words the practitioner has mastered have such power that they can cure illness due to profound neurological and endocrinological abnormalities.

    I can't think of it as anything more than ancient shamanism dressed up in scientific-seeming language: it's the casting of a spell to cure disease.
     
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  7. Valentijn

    Valentijn Senior Member

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    Indeed, the latest trend is to claim those are not biomarkers for the symptoms themselves, but are rather the biomarkers for thinking you have symptoms which you don't have :rolleyes:
     
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  8. Chrisb

    Chrisb Senior Member

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    ......all it needs is extensive study of Alice in Wonderland. If only they had studied science.
     
  9. Simon

    Simon

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    Interesting Q, and I'm not sure how well I can answer, but broadly they have some similarities but complement rather than overlap.

    All three studies: MEGA, NIH intramural and the Ron Davis study, are big data approaches that use new technologies to measure a lot of things simultaneously eg gene expression for thousands of genes, thousands of cytokines or whatever.

    The main difference is that MEGA is vast, with plans for 10,000 adult patients, compared with 40 in the NIH study (well-enough to make it to the test centre/hospital) and 20 severely-affected patients in the Davis study. On the other hand, the NIH/Davis studies will measure a lot more factors than MEGA, going for depth rather than breadth, particularly focusing on the immune system.

    The NIH study is also built around an exercise challenge (before/after data), which adds another dimension, as well as having far more broader measures eg brain scans and metabolic chambers.

    My guess is that the MEGA study will be the most expensive by far, and the cohort it will use should provide samples for use beyond the immediate study. Given it's size it should produce more robust findings than the NIH/Davis studies, and is able to apply genomics, looking for genetic links to mecfs across the whole genome, that simply can't be done in smaller studies. There again, the NIH/Davis studies, by using more in-depth approaches, could find things MEGA isn't looking at.

    And even though the NIH/Davis studies are both looking at the immune system in a lot of detail, they are apparently using very few of the same techniques.
     
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  10. JaimeS

    JaimeS Senior Member

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    Wow, that's especially elegant! You have to admire that kind of f^@kery.

    [Edit: @Valentijn , I'd love to write a farcical piece on that. If you remember where you saw such a study/studies, feel free to PM me.]
     
    Last edited: May 17, 2016
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  11. user9876

    user9876 Senior Member

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    I think that was a great answer.
     
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  12. Aurator

    Aurator Senior Member

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    "Observers"? I can see no good that can come out of the attendance of certain "observers" in that list, who have views on ME/CFS that are hardly the product of authentic scientific enquiry.
    I'm puzzled why they were even there then. Their irrelevance to the study is plain even before it gets off the ground. Was somebody humouring them by letting them tag along, or are they actually pulling the strings - some strings, at any rate?
     
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  13. duncan

    duncan Senior Member

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    It is a little disconcerting how similar this discussion is to ones we had about the NIH study.
     
    Last edited: May 17, 2016
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  14. Sasha

    Sasha Fine, thank you

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    Perhaps no good but perhaps not much harm either - I don't see them as having that much influence when the study is a biomedical one being run by biomedical heavyweights.

    Maybe they're just interested - maybe they're hoping to have some influence. But I think we need to get away from the assumption that when there are 12 biomedical scientists pus 3 BPS people on the sidelines, the BPS people will be "pulling the strings". I know we're used to seeing them in positions of influence but I think we can trust the biomedical people to see any attempts to manipulate or subvert the study coming a mile off - and it's clear that GDS and the biomedical people are in charge.
     
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  15. Valentijn

    Valentijn Senior Member

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    Several of the researchers involved with the upcoming NIH study have done it before, for Fibromyalgia and Functional Movement Disorders. I'm hoping their next example does not involve ME :p
     
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  16. JaimeS

    JaimeS Senior Member

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    Lovely.
     
  17. TiredSam

    TiredSam The wise nematode hibernates

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    I'm not sure they'd be happy with a submarine, or a steamroller. Maybe they're looking for a nice shiney new ship to jump onto when the good ship PACE sinks to the bottom?
     
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  18. halcyon

    halcyon Senior Member

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    Has there been any discussion of how they plan to recruit and verify these patients? The misdiagnosis rate in the UK is circa 40% so I hope they're not relying on initial diagnosis for recruitment. I feel like finding 10,000 genuine ME patients to recruit would be pretty difficult.
     
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  19. Sasha

    Sasha Fine, thank you

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    https://www.facebook.com/actionform...72990583208/10154173687788209/?type=3&theater
     
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  20. Simon

    Simon

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    Like that.

    And I hope the phenome centre can help. Dr Rick Dunn is the member of MEGA who does metabolomics.
     
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