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ME/CFS Grand Challenge (MEGA)

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

  1. Scarecrow

    Scarecrow Revolting Peasant

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    New details about the Grand Challenge (now named MEGA for all you lovers of acronyms).

    This info was received by e-mail but will shortly be available here:
    https://www.actionforme.org.uk/research/uk-cfsme-collaborative/


     
  2. worldbackwards

    worldbackwards A unique snowflake

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    But not that much.
     
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  3. Sasha

    Sasha Fine, thank you

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    Give them a chance! :)
     
  4. ronddejambe

    ronddejambe

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    This looks incredibly exciting.
     
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  5. JaimeS

    JaimeS Senior Member

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    ....some really awesome people and some really scary people. Not sure how to feel!
     
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  6. Sasha

    Sasha Fine, thank you

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    The awesome people seem to be on the list of experts and the considerably less awesome ones on the list of observers.
     
  7. Simon

    Simon

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    There's not a whole load of detail, but we know we are talking about huge cohorts: 10k adult and 2k child cohorts, plus controls (which are likely to exist already for most of the omics, as we are late to this party). There's nothing like this anywhere in the world.

    Plus a lot of new researchers are coming to play. Profs Paul Moss (infection), Maria Fitzgerald (pain), Jim Horne (sleep) and Paul Little have certainly shown an interest before but I'm not sure they've done any mecfs-specific research. Profs Chris Ponting, Colin Smith and George Davey Smith (Genomics, which increasingly includes transcriptomics (RNA) and a load of other stuff); Dr Rick Dunn (metabolomics), Prof Caroline Relton (Epigenetics), Somalogic (proteomics/serologics) are all new AFAIK.
    [SomaLogic | Unlocking protein biomarkers to transform healthcare]

    My main take out from this is that a whole load of talent from other areas is taking a keen interest in mecfs for the first time, ready to apply some smart technology - widely used in other, less-neglected illnesses - to our illness. And doing so on a huge sample. Finally, some serious, large-scale biomedical research in the UK (though this would also be the biggest cohort by far anywhere in the world).

    It's not going to be fast though, sadly. Big science isn't quick.

    And this
    Good! The NIH showed how essential it is that this is done well. Apart from better relations, proper patient involvement makes for better science, in my view.
     
    Last edited: May 17, 2016
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  8. Esther12

    Esther12 Senior Member

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    I don't think I'd feel comfortable supporting anything involving White, Crawley and Collin. Certainly not until they've apologised.
     
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  9. user9876

    user9876 Senior Member

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    I worry about them being seen as the 'ME Experts' if they are used to define inclusion criteria. I do think given the numbers inclusion criteria should be wide but it is also important to document the patients symptoms and severity so that proper subgroup analysis can be done. I get concerned as I things like the CFQ that this group like have no place in any research context. Also I would worry that the language they use is inappropriate in collecting symptoms from patients.

    The rest of the group look good.

    My biggest concern is it is very slow moving and is it an all or nothing project for funding?
     
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  10. ronddejambe

    ronddejambe

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    I think the really scary people aren't going to get a look in, to be honest. The big hitters are going to be the proper scientists - you know, the ones who rely on actual evidence ;) I suspect they would be polite to anything a psychiatrist says but not give it much credence (I'm talking with regards to M.E).

    I can imagine results coming up on the screen, 'we have x, y, z abnormalities here, fascinating.' A certain psychiatrist might interject, 'but we should still consider false illness beliefs.' It would be met with a withering stare. I think they were paying lip service to the psychs and letting them feel they had a say and nothing more. But I'm no expert.

    I get why people would be alarmed, but I think this is going to be incredibly positive.
     
  11. ronddejambe

    ronddejambe

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    I think there is zero chance of ever getting any apology from White, Crawley and Collin. Don't hold your breath. Cognitive dissonance and all that.
     
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  12. JaimeS

    JaimeS Senior Member

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    I had the exact same thought, @user9876 -- I hope the data they collect is quite thorough.
     
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  13. user9876

    user9876 Senior Member

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    I do think this is one of the areas where patients can really contribute in terms of ensuring that a range of symptoms and severitys are represented. I think it would also be good to capture something of the progression of symptoms over time how things like PEM manifest.

    A different concern is that I think activity prior to sample collection should be recorded. As time goes on this gets easier but is still a cost. I worry that ME is by its nature a disruption of a dynamic system caused be exertion and that the medical profession don't think about sample rates and measuring events that might shock the dynamic system (such as going to the hospital to get blood taken)
     
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  14. Esther12

    Esther12 Senior Member

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    I agree... which is one reason why it's so important that nothing is done which allows them to secure their positions as CFS 'experts'.
     
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  15. Simon

    Simon

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    I assume half a grant for 5k patients wouldn't cut it - if they don't get the grant they are trying from with Wellcome (according to CMRC minutes), I guess they could then apply elsewhere.

    Yup, sure patients have a much better understanding of symptoms, esp PEM, than many physicians

    One very cheap option would be to ask patients how they feel when the samples are taken eg good day/bad day, or some sliding scale - that might help reveal any effects of PEM on eg metabolomics.

    I think all of those people already have established reputations as 'experts'. Though in this field, I always think 'specialist' is a better term - I'm not sure there are any 'experts' on mecfs; the science isn't yet at that stage (which, of course, is the problem).
     
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  16. Esther12

    Esther12 Senior Member

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    If PACE falls, or is just badly wounded, they'll all be in a very precarious positions. I am worried that their involvement in this project could help lead to another decade+ of people like this controlling the direction of ME/CFS research in the UK.
     
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  17. user9876

    user9876 Senior Member

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    Thats a good approach. Also asking about the complexity/difficulties of getting to the collection center. If someone has a difficult bus journey or a long walk from a car park then this could be reflected in blood results and cause PEM the next day. Although they could be asked the next couple of days as well.
     
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  18. user9876

    user9876 Senior Member

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    One positive is the inclusion of experts in medical data who have also worked on sharing and privacy. This would prevent the type of thing happening with PACE where they claim any data that may not back their theory as personal and sensitive.
     
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  19. Comet

    Comet I'm Not Imaginary

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    I find it incredibly difficult to get behind a study which involves people who's research is directly responsible for holding back science, treatment and progress for My illness.
     
  20. Sasha

    Sasha Fine, thank you

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    I don't think it makes any sense to withhold support from the likes of George Davey Smith just because there are some BPS hangers-on. The BPS crowd are going to be so far out of their depth in this study that they'll need a submarine. They're going to be completely and utterly irrelevant, IMO.
     

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