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SAHMRI (Adelaide) researchers taking blood every 7 mins to look for ME/CFS inflammatory markers

Discussion in 'BioMedical ME/CFS News' started by Sasha, Nov 2, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Story in the Australian news:

    SAHMRI researchers in hunt to find cure for Chronic Fatigue Syndrome

    WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.

    Rebecca Baker
    The Advertiser
    NOVEMBER 2, 2017

    WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.

    Thousands of samples taken for the study are now being stored in a freezer to allow each one to be sructinised during a painstaking process, expected to take about a year.

    Senior research fellow Michael Musker said the work being done at the South Australian Health and Medical Research Institute to try and understand Chronic Fatigue Syndrome (CFS) had “world-wide significance”.​

    Full story here: http://www.news.com.au/lifestyle/he...story/055d7aa1a1bc0ae1c0ea76029d1e8b2a#.ig02r
     
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  2. Valentijn

    Valentijn Moderator Staff Member

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    This would be more interesting if it followed exertion or similar. I'm not sure we'd have much variation sitting around on an average day.

    A more in-depth article which appears to be about the same study is at https://meaustralia.net/2016/08/14/meet-the-scientists-dr-michael-musker/
    Patient recruitment info & consent form: http://sacfs.asn.au/download/PICF Chronic Fatigue Syndrome v1.1 24-3-16 clean.pdf

    The three investigators listed are all primarily involved in depression research. Their interest in genetics doesn't seem to go beyond discovering which antidepressant works best for each patient. The blood parameters they're interested in for CFS are ones which they tie to mood disturbance, weight gain, and sedentary behavior.

    They don't give a clear statement of recruitment criteria or symptoms, but vaguely refer to the CCC, though also list Fukuda when recruiting for an intern. They habitually use the term "CFS", and refer to the relevant symptoms as "fatigue" and "exhaustion". Musker responded with a lot of waffle to ME Australia when asked what "recovery" means (it's different for everyone), and he won't comment on PACE. He thinks CBT and GET research is a good idea, and can be helpful:
    They do incorporate biological aspects into their research, but they are very much a psychosocial group.
     
    Last edited: Nov 2, 2017
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  3. sea

    sea Senior Member (Voting Rights)

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    :(:banghead:

    CFS is the main term used in Australia by doctors and researchers. It's really only the researchers who have good links with the worldwide research that use ME or ME/CFS. It is a good clue about how well informed they are ;)
     
  4. AndyPandy

    AndyPandy Established Member (Voting Rights)

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    When I first saw this I thought it looked promising :(.

    Thanks for the critique.
     
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Basically this, they may find something but adding a change in blood chemistry by pushing the thing that burns us is more likely to show something useful. If anyone knows a way to give them this 'revolutionary' idea please go for it
    To be honest i don't think what they are doing is going to find much, though i would not mind being proven wrong.
     
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  6. Valentijn

    Valentijn Moderator Staff Member

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    That would require them to acknowledge that PEM exists. I don't think they've even said the name of that symptom.
     
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  7. MErmaid

    MErmaid Senior Member (Voting Rights)

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    They may find Leptin abnormalities, for a subset. But from reading the links, and their lack of ME expertise, I doubt they would understand why or how to correct it.
     
  8. Adrian

    Adrian Senior Member (Voting Rights)

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    I think this should be an exciting study because I believe that studies should be looking for changes over time in individual patients as this may provide more clues than lots of samples across a population. Its the kind of thing I think the metabolic studies should be doing.

    But it is a bit disappointing in that they aren't measuring much and they aren't using an activity monitor.

    I would be really interesting in their stats analysis plan (probably more so if they used an activity monitor). There I think it would be great to look for lag times between activity, blood results and how people report they feel.

    If nothing else perhaps this study will show ideas and the possibility of continuous monitoring to other groups.
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    Reminds me of this, though i assume they don't believe they are doing this
    https://en.wikipedia.org/wiki/Streetlight_effect
     
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  10. MErmaid

    MErmaid Senior Member (Voting Rights)

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    Research bias, political motivations, financial incentives....I think we have seen it all. Research funds keep people employed, labs operating, and gives the outward appearance of progress.
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm not that cynical, progress does happen and we do need to cast a wide net because if we only researched what we know will give the results we want we would not have to research in the first place. However adding intelligence to research will increase the odds of success.
     
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  12. MErmaid

    MErmaid Senior Member (Voting Rights)

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    I certainly don’t feel cynical about all research. And I agree adding intelligence will increase the odds of success. I feel that recent cancer research is a good example of how to increase intelligence, and thus yield a better outcome. But with ME, I question some of the studies, in particular the ones that lack a basic understanding of PEM.
     
    Last edited: Nov 3, 2017
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  13. Alvin

    Alvin Senior Member (Voting Rights)

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    I agree, at this point we are ahead of many of the researchers so they would actually benefit from consulting us until they get up to speed (assuming they actually want to get up to speed)
     
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