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What research do you want to see?

Discussion in 'General Advocacy Discussions' started by JohnTheJack, Jul 7, 2018.

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Page 5 of 6
  1. dreampop

    dreampop Senior Member (Voting Rights)

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    It sounds like something similar the OMF Melbourne study is doing - although not to the length and extent you propose.

     
    dreampop, Oct 21, 2020
    #81
    Michelle, Kitty, andypants and 5 others like this.
  2. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    In the late 1990s, I gave lots of blood to be studied like this at the Hunter Hopkins Center in Charlotte, North Carolina. Dr. Chales Lapp was unable to find anything that pointed to my improvement. I hope 20 years later the OMF is able to find some clues.
     
    cfsandmore, Oct 21, 2020
    #82
    Kitty, Amw66, MEMarge and 1 other person like this.
  3. Andy

    Andy Committee Member

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    22,297
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    Hampshire, UK
    Replication. In a way, the ME research field has it's own replication crisis, in that there are rarely attempts to independently replicate anything that is found. So I'd like to see efforts made to replicate all the things!
     
    Andy, Oct 23, 2020
    #83
    EndME, LJord, Simbindi and 13 others like this.
  4. Ravn

    Ravn Senior Member (Voting Rights)

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    This! And again, for emphasis: THIS!!!

    Just how do we get funding for replication studies? The whole research ecosystem seems to be set up so that it's those chasing the latest and newest angle with the shiniest toys are the ones who get whatever little funding is available for biomedical ME research. Could the charities play a role by setting aside a certain percentage of their grants for replication studies?
     
    Ravn, Oct 24, 2020
    #84
    Simbindi, MEMarge, Hutan and 9 others like this.
  5. Mike Dean

    Mike Dean Senior Member (Voting Rights)

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    Location:
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    Agreed, a scoping review of the thousands of studies ought to identify at least a few that deserve replication.
     
    Mike Dean, Oct 24, 2020
    #85
    Michelle, cfsandmore, mango and 2 others like this.
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    I wonder what might be the best approach to this? Some of our best-known researchers are pretty busy with the grants and research programmes that they have got, though I'm sure there are scientists among them who could find some time to devote to this.

    Would there be any value in recruiting (assuming funding could be found) a panel of experienced researchers who are sympathetic towards biomedical research on ME, but are at least one step removed from the work of the last few years? Perhaps they could bring some valuable perspective to a review of the evidence to date.
     
    Kitty, Oct 24, 2020
    #86
    Michelle, Mij, cfsandmore and 1 other person like this.
  7. Mike Dean

    Mike Dean Senior Member (Voting Rights)

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    147
    Location:
    York, UK
    Maybe something for the PSP to make a case for. There would be several strands - in vitro, in vivo, clinical etc. Mapping where early research has foundered or moved to the next level would definitely be useful.
     
    Mike Dean, Oct 24, 2020
    #87
    MEMarge, Michelle, Andy and 3 others like this.
  8. Hutan

    Hutan Moderator Staff Member

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    Hutan, Oct 26, 2020
    #88
    Binkie4, MEMarge, andypants and 5 others like this.
  9. Andy

    Andy Committee Member

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    22,297
    Location:
    Hampshire, UK
    Code:
    https://twitter.com/ahandvanish/status/1358816485674790913
    https://twitter.com/user/status/1358816485674790913
     
    Andy, Feb 8, 2021
    #89
    Binkie4, Trish, MEMarge and 1 other person like this.
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I'd be interested in having this replicated:

    https://www.sciencedirect.com/science/article/pii/S2467981X20300044

     
    Snowdrop, Feb 8, 2021
    #90
    Milo, Hutan, It's M.E. Linda and 1 other person like this.
  11. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    It's M.E. Linda, Feb 9, 2021
    #91
    MEMarge, Milo and Snowdrop like this.
  12. Hutan

    Hutan Moderator Staff Member

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    Merged thread
    Every day I come across ideas for studies. And yet, when I come to put together a list, I struggle. So, I thought we could jot down ideas as we think about them or see them, ideally with a link to a thread that discusses them more.

    We have had a Members Only thread about this, but I reckon a public one is worthwhile.
     
    Last edited: Mar 31, 2024
    Hutan, Mar 30, 2024
    #92
    Binkie4, MEMarge, JohnTheJack and 10 others like this.
  13. Hutan

    Hutan Moderator Staff Member

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    27,791
    Location:
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    Ebola - incidence of ME/CFS, and comparison with other diseases
     
    Hutan, Mar 30, 2024
    #93
    Binkie4, JohnTheJack, EzzieD and 5 others like this.
  14. Hutan

    Hutan Moderator Staff Member

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    Post-mortem studies - brain and muscle and bone marrow histology, presence of pathogens
     
    Hutan, Mar 30, 2024
    #94
    Binkie4, MEMarge, JohnTheJack and 7 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    GWAS followup to DecodeME
     
    Hutan, Mar 30, 2024
    #95
    Binkie4, EzzieD, mariovitali and 5 others like this.
  16. Hutan

    Hutan Moderator Staff Member

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    Investigation of changes in proteomics etc during pregnancy in ME/CFS, coupled with symptom monitoring. Does pregnancy have an impact on ME/CFS severity?
    Poll: Did pregnancy affect your ME?
     
    Last edited: Apr 1, 2024
    Hutan, Mar 30, 2024
    #96
    mariovitali, alktipping, Kitty and 1 other person like this.
  17. Hutan

    Hutan Moderator Staff Member

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    Followup on Paul Hwang’s work on WASF3 in muscle cells/ unfolded protein response/ endoplasmic reticulum response to cellular stress
     
    Hutan, Mar 30, 2024
    #97
    Binkie4, EzzieD, mariovitali and 5 others like this.
  18. Hutan

    Hutan Moderator Staff Member

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    Replication of the repeated CPETs, at a large enough scale to provide convincing evidence one way or another
     
    Hutan, Mar 30, 2024
    #98
    JohnTheJack, EzzieD, mariovitali and 3 others like this.
  19. Hutan

    Hutan Moderator Staff Member

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    Multiple repeated exertion over a series of days – where participants exercise each day for up to 5 days – with wearables assessing activity and proteomics
     
    Hutan, Mar 30, 2024
    #99
    JohnTheJack, mariovitali, Kitty and 1 other person like this.
  20. Hutan

    Hutan Moderator Staff Member

    Messages:
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    Location:
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    ME/CFS Patient registry studies to get better information about disease course
     
    Hutan, Mar 30, 2024
    #100
    Binkie4, MEMarge, JohnTheJack and 6 others like this.
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