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Column in Times by Sandi Toksvig on women's health refers to MUS

Discussion in 'Health News and Research unrelated to ME/CFS' started by JohnTheJack, Sep 14, 2018.

  1. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    Here:
    https://www.thetimes.co.uk/article/...g-field-levelled-on-health-outcomes-vgg0fv0zk


    When women do seek out help, they are frequently disbelieved. My favourite diagnosis is something called “Medically Unexplained Symptoms” (Mus). This is a catch-all phrase for things that simply cannot be explained by medical science and so are assumed to be physical manifestations of emotional issues. Or, as my mother would say, “a lot of fuss about nothing”. Women are four times more likely to be diagnosed with Mus and being a woman is one of the risk factors that GPs are trained to look for when handing out this non-diagnosis. The reason women’s pain is poorly understood is because we simply know far less about the female body than the male one. Until recently, women were entirely excluded from clinical research.
     
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  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Interesting. Sandi would be a great ally, clever funny, with a social conscience. In the uk she was a joint founder of the women’s equality party. I dont know much about them but I know jen in the USA was trying to get the women’s movement to take an interest. Obviously the illness affects men to but there is the connection as unrest showed with dismissing women’s health issues as psychological and POTS, FM and ME seem very “shelved” as not important.
     
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  3. Tia

    Tia Established Member (Voting Rights)

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    Brilliant. Love her. She seems to know what she's talking about on this, she's spot on. I might be tempted to join the women's equality party ... :thumbup::thumbup:
     
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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Oh, that's a great idea if @JenB connected with Sandi Toksvig.

    I adore Sandi Toksvig. And my impression is that she has increased her interest for medicine after one of her children started med school.

    Thanks for sharing the link @JohnTheJack !
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Some nice comments in there.

    I am not sure about us knowing less about the female body and women being excluded from research. Certainly in my lifetime. Several of the really big epidemiological studies have been on women - like the nurses study in the States. My memory is that far more work went into female predominant problems like hormone replacement therapy in relation to breast cancer and thromboembolism than than ever went into anything male in the 1970s and 1980s.
     
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  6. Trish

    Trish Moderator Staff Member

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    I suspect JenB has enough on her plate already. Since Sandi is in the UK and speaking to a UK audience it might be better for some UK women to respond to Sandi.
     
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  8. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I would love her to be an advocate for us, although I think “it could happen to you” agenda is far more powerful than riding on the back of gender discrimination thing
     
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  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think it's hard to judge (for me) what is really the optimum strategy that will yield results.

    The thing is, I don't think it matters. While it's a good idea to think through strategies for what to do I think it's more about eliminating potential backfires. Otherwise a variety of strategies whether optimum or not (since it's not always possible to tell) are better than just one way of confronting the issue.

    Obviously, connecting with women's health issues won't be meaningful to everyone but again I don't think every strategy needs to resonate with every single member of this community so long as we all get served by the total of strategies and all benefit from the results at the end.
     
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  10. Sean

    Sean Senior Member (Voting Rights)

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    This.

    We don't have to convince everybody, just enough of the right people.
     
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  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Oh sorry I was thinking more about joe public and awareness. Personalities are generally used for awareness raising and fund raising as part of a wider campaign. You tend to keep them away from political issues since it dilutes the other message and divides people , when you want to hit big numbers.

    Having witty articulate national treasure Sandi talking about how devastating the disease is for everyone and how disabling it is and how it could happen to anyone and there is no cure will probably be more effective than narrowing her activity to women’s issues, the politics of PACE and the NICE guidelines. She could branch out a bit into the scientific research bit as part of that in context of fund raising but I think that would go over most people’s heads?

    I’m thinking Ewan mcgreggor does unicef rather than Jamie Oliver meddling in creating a sugar tax and a ban s on food promotions.

    That doesn’t mean you can’t be doing the other stuff...just probably better doing it without a personality involved...lot of words sorry.
     
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  12. Sean

    Sean Senior Member (Voting Rights)

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    Always liked Sandi T's work, and if we are going to have 'celebs' helping to campaign for us (and I think we should, coz that's the way the world works), then she would be one of my top choices. :hug:
     
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  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    “This weekend the Women’s Equality Party launched its health policy for women....
    Among the raft of brilliant policies that were voted through by members were quotas for research commissioners, a health institute for women and a requirement that prescription drugs are clearly labelled “not tested on women”. Because, until we understand how treatments affect women, they will continue to be mistreated.
    Sandi Toksvig is a comedian, writer, actor, presenter, producer and political activist”

    https://www.thetimes.co.uk/article/...g-field-levelled-on-health-outcomes-vgg0fv0zk

    I think the prejudice, neglect around illlesses like ME , FM and POTS are very fitting of the parties attention, especially if they’re already aware of the issues around MUS. The psychiatrists beard et al who called ME royal free outbreak hysteria in the 70s also used the “affecting women” as a reason for that psychological diagnosis

    Maybe the new #MEAction UK leader could have recruiting effective ambassadors on board as a top priority and contact Sandi with a link to unrest. If the Scottish lib Dems can take on our cause then the WEP can as well, although it looks like they have launched their health policy for the year..
     
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  14. Nasim Marie Jafry

    Nasim Marie Jafry Senior Member (Voting Rights)

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    Good that you alerted Sandi T on Twitter to plight of pwME, John. Would be great if someone in UK with ‘clout’ could involve her more. I have not been impressed by awareness-raising of any of the ‘celebs’ in UK who apparently have/had ME - often they seem to have been misdiagnosed. Would be fab to have someone like Sandi T as an ambassador. I would tbh much rather we could attract funding without celebs, that the disease was enough. Unfortunately, ME is such a hard sell, as we know, and in these times celebs *can* be a good platform for awareness.
     
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  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I don’t see anything wrong with involving celebs. Celebs aRe just people that lots of people know and are more likely to listen to who also have contacts, they’re “influencers” in the way we can’t be alone. A celeb with a brain, good oratory, understanding and genuine care could really help and it’s not like other illnesses haven’t been helped by having Stephen fry, Christopher eccleston, princess di, Elton John etc involved. If any common illness needs a helping hand up, Its us.

    Thanks to whoever has been contacting Sandi.
     
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  16. Nasim Marie Jafry

    Nasim Marie Jafry Senior Member (Voting Rights)

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    That's why it's important that celebs who have a platform for ME either actually have it and/or are have good oratory and a brain.
     
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  17. Barry

    Barry Senior Member (Voting Rights)

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    A crucial thing is that the celebrity needs to be more interested in the cause than their celebrity.
     
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