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    Dr Mike Musker from SAHMRI discusses research

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    • emsarah
      emsarah last edited by

      Hi everyone,
      If anyone is interested, Dr Mike Musker from SAHMRI in Adelaide discussed his research in ABC Radio this week. A couple of ME/CFS patients were interviewed too. Here is the link. The interview starts at 1:01:50 and goes for about 20 mins.

      She/her
      Diagnosed Jan 2022

      Lau_EA_Aus G 2 Replies Last reply Reply Quote 3
      • Lau_EA_Aus
        Lau_EA_Aus @emsarah last edited by

        @emsarah Thank you, I will listen to the replay 😀

        she/her - ME/CFS since 1998, diagnosed 2004
        My role in the forum is to help maintain a safe space, supporting growth and development.
        If you would like to organise a Telehealth Nurse appointment, use the following link https://www.emerge.org.au/telehealth-nurse-service

        1 Reply Last reply Reply Quote 2
        • emsarah
          emsarah last edited by

          @Lau_EA_Aus it was great to hear on a radio station lots of people listen to!

          She/her
          Diagnosed Jan 2022

          Lau_EA_Aus 1 Reply Last reply Reply Quote 1
          • G
            Glimmer @emsarah last edited by

            @emsarah That was very good. Thanks for sharing.

            1 Reply Last reply Reply Quote 2
            • Lau_EA_Aus
              Lau_EA_Aus @emsarah last edited by Lau_EA_Aus

              @emsarah I will listen over the weekend and if have some space will write a short summary for our forum.

              she/her - ME/CFS since 1998, diagnosed 2004
              My role in the forum is to help maintain a safe space, supporting growth and development.
              If you would like to organise a Telehealth Nurse appointment, use the following link https://www.emerge.org.au/telehealth-nurse-service

              1 Reply Last reply Reply Quote 2
              • emsarah
                emsarah last edited by

                That's good @Glimmer! I think it would have given people who don't know much about this illness a good perspective.

                Sounds excellent @Lau_EA_Aus, looking forward to reading it.

                She/her
                Diagnosed Jan 2022

                1 Reply Last reply Reply Quote 2
                • Dot
                  Dot last edited by

                  Thanks for posting 🐔
                  I do hope they get lots of people prepared to take part in the research!

                  1 Reply Last reply Reply Quote 2
                  • emsarah
                    emsarah last edited by

                    Hopefully @Dot! I liked that they said they would do the testing in people's homes because obviously it's way to much for a lot of patients to go in.

                    She/her
                    Diagnosed Jan 2022

                    Dot 1 Reply Last reply Reply Quote 2
                    • Dot
                      Dot @emsarah last edited by

                      @emsarah Yes, they obviously understand life with ME/CFS really well 🙂

                      1 Reply Last reply Reply Quote 2
                      • Lau_EA_Aus
                        Lau_EA_Aus last edited by

                        Hi everyone. I found this article and thought some may like to read it.

                        Researcher Interview: Mike Musker
                        By Jason Murphy

                        Meet Mike Musker. A former mental health nurse who took the path less traveled. Musker is now a scientist with some excellent research underway.

                        He works with the South Australian Health and Medical Research Institute, and his research – including one major project near completion and another about to start - is definitively biological in approach. The nearly-finished study looked at 23 ME/CFS cases versus 12 controls and sampled their blood in a very unusual way.

                        “We wanted to look at what’s happening in people’s blood in relation to ME/CFS,” Musker says. “Looking for biological causes, the biological basis of it.”

                        The sampling process was intensive. Patients were invited into the lab in the morning and seated in an enormous luxury recliner where they could read, snooze, and watch TV for eight hours. During that period, their blood was taken repeatedly, using a machine called an Edwards VAMP. The rarely-used but highly-promising device permits frequent blood tests without draining a patient completely, by returning blood that would otherwise be wasted to the patient after the sample is drawn. Each sample is just four milliliters.

                        “I placed a cannula in their arms at 9am and we took the first sample at 9am and we took a sample every seven minutes until 5pm. That was 69 samples across the day. We were then able to see the differences in the cytokines across the day.”

                        Musker is an unusual scientist who follows the blood from the body to the bench. His background as a nurse means he was the one who drew the samples, and also the one who analysed them in the lab.

                        “I’m a jack of all trades, I do everything!” he says.

                        The study was designed to test the hypothesis that tiny signaling molecules called cytokines are different in people with chronic fatigue syndrome compared to controls. The analysis so far suggests real differences – but not the exact ones researchers were expecting.

                        It tracked three molecules of interest – interleukin-6, interleukin-1-beta, and leptin. The first two, Musker explains, are inflammatory markers.

                        “They were lower in people with ME/CFS,” he says, referring to interleukin-6 and interleukin-1-beta.

                        “In fact, they were hardly noticeable, whereas in the controls they were a reasonable value that we could read. That was quite clear. That would indicate to me that people with chronic fatigue syndrome, their inflammatory system might not be responding like a normal person would. In other words, it’s almost switched off. But if you are constantly under that adrenaline, your body stops listening to that message and you get chronic stress, I wonder if that’s what’s happening with chronic fatigue syndrome. That’s a theory I’m going to put forward.”

                        The third molecule that was supposed to be of interest surprised the researchers, who had previously tracked its fluctuations in depression. Instead of varying, it remained very, very stable.

                        “All 35 people, their leptin levels barely changed across the day. A third of the people had really high leptin levels, a third had medium, a third had low, but they were all stable across the day.”

                        This is an important part of science – hypotheses that don’t work out. The discovery leptin is stable in ME/CFS patients during the day can help other researchers place their findings in context. For example, University of Alabama at Birmingham researcher Jarred Younger has a well-known piece of research called the “good-day, bad-day study” where he monitors immune markers in female patients over 25 days to see what varies. He has found higher leptin is associated with higher levels of fatigue. The intriguing information that leptin is very stable within the day helps refine the kind of questions researchers should be asking.

                        Contrasting high fatigue times with low fatigue times is an excellent approach for unpicking the mystery of ME/CFS, so it is wonderful news the next study Musker is involved in will do just that.

                        “We are going to take 40 people with ME/CFS, and 20 controls. We are going to wait until they have a crash and take their blood, even if I have to go out to their home and take it. And then I want to take it when they are feeling better .... And we are going to measure 72 cytokines this time.”

                        Once again, Musker will draw the blood, put the samples on dry ice, drive them back to the lab, then “spin it and put it in test tubes.”

                        The study has been delayed by COVID-19, but the hope is the experimental design will reveal key molecules of interest that are signatures of a crash in ME/CFS patients. If so it would contribute enormously to the growing understanding of the molecular basis of the illness. Musker is very enthusiastic when he talks about this project and sends a message of optimism to the ME/CFS community.

                        “I would encourage people to be hopeful for the future,” he says. “Don’t give up hope, and as funds come in we can hopefully do some good research and get some positive solutions.”

                        He’s practical, optimistic, and also, thanks to the Mason Foundation, well-funded. Mike Musker is one reason to be optimistic about science eventually coming to grips with this terrible disease and even, hopefully, generating treatments.

                        About Jason Murphy:
                        Jason Murphy is a freelance journalist and economist who began his career in the Federal Department of Treasury before moving onto journalism. Now Jason's work can be found all over the internet in the Australian Financial Review, News.com.au, The Advertiser and many other Australian news outlets. Jason excels in taking complex information and breaking it down for readers to give a better understanding of intricate systems to the public.

                        she/her - ME/CFS since 1998, diagnosed 2004
                        My role in the forum is to help maintain a safe space, supporting growth and development.
                        If you would like to organise a Telehealth Nurse appointment, use the following link https://www.emerge.org.au/telehealth-nurse-service

                        G river Dot 3 Replies Last reply Reply Quote 5
                        • emsarah
                          emsarah last edited by

                          Thanks for sharing @Lau_EA_Aus, I loved reading that!

                          She/her
                          Diagnosed Jan 2022

                          1 Reply Last reply Reply Quote 1
                          • G
                            Glimmer @Lau_EA_Aus last edited by

                            @lau_ea_aus Hooray for Mike Musker. Sounds like he’s following the right path. 🔬

                            1 Reply Last reply Reply Quote 1
                            • river
                              river @Lau_EA_Aus last edited by

                              @lau_ea_aus that is super cool, thanks for sharing!

                              Pronouns: they/them - ME/CFS since 2017

                              1 Reply Last reply Reply Quote 2
                              • Dot
                                Dot @Lau_EA_Aus last edited by

                                @lau_ea_aus Thankyou. So interesting, and a bit exciting!

                                1 Reply Last reply Reply Quote 1
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