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

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.

 

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 ...

 

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 !

 

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.

 

From May 20, 2017:

Women's Equality Party 2017 election manifesto:

https://forums.phoenixrising.me/ind...ty-in-thanks-for-their-position-on-mus.51585/

Manifesto:

https://d3n8a8pro7vhmx.cloudfront.n...51/WE_3495_Manifesto_2017_V4_Singles.pdf?1494

The ref to MUS was on Page 26.

 

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

 

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.

 

This.

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

 

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.

 

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.

 

“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..

 

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.

 

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.

 

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.

 

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