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Blog: Lloyd's Fatigue Clinic study asks “are women with CFS ovary-reacting?”

Discussion in 'PsychoSocial ME/CFS News' started by Ravn, Oct 24, 2018.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    "Ovary-reacting???!!! :woot::wtf::arghh::banghead:

    Read the whole post by ISHO (In Susan's Humble Opinion) here:
    https://ishoblog.com/2018/10/18/pas...08nkuRdpYynFghkQe_3kFphx5Amb-C9XoA8ygVh4ulxz0
     
    Last edited by a moderator: Oct 24, 2018
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  2. Hutan

    Hutan Moderator Staff Member

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    Screen Shot 2018-10-24 at 10.12.35 PM.png

    Are women with CFS ovary-reacting?
    Well, this study certainly won't tell us. Because the only criteria related to illness is that women must be
    "experiencing significant and chronic fatigue".

    And this is from the clinic of the man who regards himself as the shining light of Australian CFS research.

    @dave30th - I think you are needed here.
     
  3. Inara

    Inara Senior Member (Voting Rights)

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    Incredible. Dumbness is infinite indeed. At the same time, these developments are disturbing.
     
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  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Oh dear..... Where would you even start to describe how poor this is?

    For a start not all "significant and prolonged fatigue" is the same and certainly does not equate to chronic fatigue syndrome.

    I would love to know what they are planning to rule out -- for example thyroid disease, anaemia, diabetes, etc., etc.

    I fear the poor choice of title demonstrates the contempt of the researcher and a further trivialization of the impact ME/CFS has on the lives of patients.
     
    Last edited: Oct 24, 2018
  5. Matt (@DondochakkaB)

    Matt (@DondochakkaB) Established Member (Voting Rights)

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    It's sort of a gift really, absolutely carelessly offensive.

    It's like a parody come to life. I would imagine you might find a lot of allies to denounce this.
     
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  6. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Last edited: Oct 24, 2018
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  7. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Funded by the Mason Foundation, looking for women with a CFS diagnosis but doesn't say what inclusion criteria they are using.

    Using questionnaires, saliva, and urine samples.

    hmmm.
     
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Inclusion criteria say-
    Well, which is it? A cycle with a ten day variation range or a regular cycle?

    Questionnaires again. Though they are in addition to saliva and urine tests done at home. So the questionnaires ask

    They also say:
    45 minutes of filling in a questionnaire would completely wipe my cognitive function. Especially, as they seem to expect you to do it all on the same day.
     
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I think they're saying it should be regular and within a normal range. So someone whose cycle is 33 days every time would be fine, but someone whose cycle is 25 one month but 35 the next would not, because it's not 'regular'? I agree it could be worded better.
     
  10. Revel

    Revel Senior Member (Voting Rights)

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    I had one of my ovaries removed last month. How soon should I feel 50% less fatigue? Anyone? :confused:
     
  11. Hutan

    Hutan Moderator Staff Member

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    Hmm
    The flyer criteria is 'experiencing significant and chronic fatigue'.
    The fine print says ' a diagnosis of chronic fatigue syndrome' and apparently there are screening questions about symptoms.
    So, ok.

    But I note that the flyer says :

    Screen Shot 2018-10-24 at 11.02.45 PM.png

    While the fine print says
    Screen Shot 2018-10-24 at 11.08.17 PM.png
     
  12. Hutan

    Hutan Moderator Staff Member

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  13. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Absurdly insensitive heading notwithstanding, I don't see how testing hormones is offensive or has any necessary connection to hysteria. That said it doesn't look like a particularly promising science project.
     
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  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I know - I'm being pernickety. It's just that cognitive dysfunction and brain fog are fairly common and significant symptoms, so they should take extra care to be very clear.

    One of my major bug bears about questionnaires is they frequently have poorly written (deliberately?) ambiguous questions. The fact that this is acceptable has facilitated patients being mislabeled and symptoms being misinterpreted.

    If they can't get the straightforward inclusion criteria nice and clear what will the questionnaires be like?
     
    Last edited: Oct 24, 2018
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  15. dave30th

    dave30th Senior Member (Voting Rights)

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    well, the "leading light"--but I'm not sure how brightly it's actually shining.
     
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  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    So. They are deliberately misleading people from the start. We go from you will be paid $50 to you will be entered into a draw for $50.

    As the draw takes place after the study is concluded it may be possible that if one pulls out of the study they won't even have their name put into the draw. Doesn't sound very ethical.
     
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  17. Sean

    Sean Senior Member (Voting Rights)

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    So does that mean us men should have 100% less fatigue? :bear:

    The questions typically tell us more about the people who wrote them, than about the people who answer them.
     
  18. Inara

    Inara Senior Member (Voting Rights)

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    Who can participate:
    Wouldn't regular menstrual cycles indicate normal hormone levels? What's the sense of that? Or is it just to show that women with CFS are goats that react too sensitive to their hormones?
    Grrr.
     
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  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    And it's a voucher, not cash.
     
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  20. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Based on what we know so far we don't know the inclusion criteria. The information thus far is for gathering a pool of potential subjects to draw from. I suppose somebody could contact Dr Li to ask about it.

    eta - they could also ask if the voucher is for anywhere good ;)
     

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