The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Taking blood samples of donors every seven minutes aims to unlock the mystery

Discussion in 'General ME/CFS News' started by Murph, Nov 5, 2017.

  1. Murph

    Murph :)

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    http://www.news.com.au/lifestyle/he...story/055d7aa1a1bc0ae1c0ea76029d1e8b2a#.ig02r

    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 AdvertiserNovember 2, 20179:58am

    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”.

    Dr Musker says because the cause of CFS — or Myalgic Encephalomyelitis (ME) — isn’t known, there isn’t a cure or any officially approved medical treatments.

    “If we can establish what it is and how it affects the body, we may be able to find a solution,” he said.

    “The work we’re now doing hasn’t been done anywhere else and involves taking blood samples from 30 people with CFS (as well as 15 who don’t) every seven minutes, over an eight-hour period to look for inflammatory markers, and hopefully find some answers.

    “We believe that we can make a major contribution to a participant’s quality of life by finding the biological basis of their clinical symptoms ... (then) we may be able to target treatments.”

    CFS affects tens of thousands of Australians each year and is described as being like running a marathon while having a severe case of glandular fever, on top of the flu. The symptoms can last for several years.

    “If you try think of a day when you’ve felt totally exhausted – more so than even before – and then try to imagine being stuck in that mode every day for at least six months, you’ll have some idea of what it is like to have CFS,” Dr Musker said.

    “We believe that we can make a major contribution to a participant’s quality of life by finding the biological basis of their clinical symptoms ... (then) we may be able to target treatments.”

    He says the illness is commonly misunderstood and as a result can have a huge psychological impact on people, who can become isolated from friends and family.

    “There is no test for the illness and it can be difficult to get a diagnosis — patients as well as doctors can become frustrated as they can’t find an explanation for the symptoms,” Dr Musker said.

    One person who knows this first hand is Penelope McMillan, president of the SA branch of ME/CFS Australia, who has given her blood for the study.

    “People experience ME/CFS in varying degrees of severity ... those most profoundly affected survive in a darkened, silent room, unable to leave their bed and experiencing a wide range of painful and disturbing symptoms,” she said.

    “(This illness) destroys careers, tears families apart, shortens lives and holds people hostage to a painful chronic illness that has no recognised treatment and few knowledgeable doctors.

    “I have no expectation of an imminent ‘cure’ but great hopes that current research will point the way to reducing the symptoms and allowing those of us in the ME community to increase the scope of our daily lives.”
     
    lafarfelue, nandixon, Mary and 7 others like this.
  2. Murph

    Murph :)

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    So apparently this is not that new. There's a bit more here in this blog post from last year.


    Can you give us an update on how your study is progressing?
    I also manage the clinical aspect of the research. We invite the participant in for a full day, starting at 8am. After providing breakfast and a cup of tea, we then perform a Dual X-Ray Absorptiometry Scan (DEXA), which is a very light X-Ray of the whole body and provides information about bone density and fat distribution across the body. We then go to our full day of blood sampling in our clinics at SAHMRI, which includes cannulating the participant and taking blood samples throughout the day.

    We have a system that has not yet been used before in Australia called the Edwards VAMP. This allows us to take a pure blood sample, and return any excess blood to the person’s system. It is very effective and allows us to take blood samples with ease, and without discomfort for the participant. We take a total of 69 samples, taking one every 7 minutes. This seems a lot, but when you calculate the amount it is only 276 mls in total, which is less than a small glass of water, and almost half the usual amount of blood given for a usual blood donation (usually about 500mls).

    We take care of the person, ensuring they are relaxed, providing meals and media to keep them entertained. It is a comfortable environment, and there is an extremely comfortable lazyboy recliner chair, similar to those you would see in the Gold Class Cinemas.

    It actually takes three people to provide the clinical care during the research as we have to store the blood on ice immediately, then spin the blood in a centrifuge every 35 minutes to separate the red cells and plasma. We then store the plasma in a -80 Freezer for analysis. We have a Clinical Research Officer and an Honours student supporting this aspect of the research.
     
    lafarfelue and Molly98 like this.
  3. Murph

    Murph :)

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    I assumed they would be measuring PEM. But it seems they're not?!
     
    nandixon and ivorin like this.
  4. Janice Hargreaves

    Janice Hargreaves

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    This looks fascinating. I wonder if we can get any results?

    Maybe the reasons for not measuring PEM are about the ethics around causing harm?
    Just a guess to be honest.
     
    Murph likes this.
  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    PEM would be a different study. It would be nice if they could measure PEM at recruitment, to see who has it and who does not. Currently the only way to do that is with a repeat CPET. That alone would a major commitment for study participants.
     
    Diwi9 likes this.
  6. TenuousGrip

    TenuousGrip Senior Member

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    For some totally inexplicable reason, I think I'd be hesitant to have my blood 'sructinised' ;-)
     
    Murph and Mary like this.
  7. debored13

    debored13 Senior Member

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    Vermont, school in Western MA
    If I lived in Australia I would do this
     

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