Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Europe gears up for its third #MillionsMissing Day of Action - May 2017

Discussion in 'Millions Missing Campaign' started by AndyPR, Mar 16, 2017.

  1. AndyPR

    AndyPR RIP PR :'(

    More at link http://www.meaction.net/2017/03/15/europe-gears-up-for-its-third-millionsmissing-day-of-action/

    Also Facebook post https://www.facebook.com/MEActNet/posts/1890088604606870
     
  2. slysaint

    slysaint Moved to https://www.s4me.info/index.php

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    Anyone know what's happening?
    I tried to email them (using email addr on #MEAction) but it pinged back, and my browser won't let me onto their website.
    If there is anyone out there from #MM:

    As you will be aware there has been increasing pressure to get the PACE trial retracted. This has managed to attract NO PUBLICITY or recognition in the mainstream UK Media so far.

    If there is one thing that has detrimentally affected how ME is 'viewed' and 'treated' across the world it is this scandalous piece of 'research' (along with the name change to CFS).

    Outside our community, very few people are even aware of what it was or how it has influenced policy by Health Depts everywhere, stifled proper biomedical research, and could now be leading us to be confined to obscurity and added to the list of MUS by the WHO.

    I understand that #MillionsMissing aim is to raise ME awareness, but is this enough?

    Is there anyway that a message of Retract PACE now be included in the protests? It might make people who are unaware of our plight find out more. It could also be the only way the real issues get to be exposed if the media were to investigate what the PACE trial represents.

    This could be the foundation stone on which the whole ignorant BPS approach to ME is built, which once destroyed , will bring the whole lot down. This would be some achievement.

    Please consider it.

    eta: email to #MEAction (info@meaction.net) has just pinged back as well...............??
     
    Last edited: Mar 26, 2017
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  3. MEMum

    MEMum Senior Member

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    I agree, death of PACE is crucial to any change in UK.

    I don't know what info will be given out.
    I think LA Cooper was main person organising last year's London events. I think she is on the UK ME ACTION FB page. Are you on FB? I think she also posts on here sometimes.

    I am currently working on a double-sided info sheet for friends/relatives. The first side summarises IOM definition/major symptoms etc - mainly from Komaroff's summary in Annals of Internal Medicine, followed by more recent key developments in research.

    This is to show that international medics and scientists have now proven that ME is not a psychological illness and that there are measurable biomedical abnormalities in many of the body's systems.

    On the reverse I have a Summary of Errors re PACE.

    I think it's important to keep it to one piece of paper, for my purposes, but plan to have more info/references eg to Virology blog and recent published articles on PACE and current biomedical research on another sheet.

    If anyone has done something similar and would share or has ideas of refs to include that would be great.

    I will contact the organisers soon to see what they are planning to hand out/have posters of etc. There may be a protest in Brighton which would be physically easier to get to, though I may be able to persuade some London friends to join in as well if I go to London....

    Sorry, rambling on a bit.

    Basically if there is no info re PACE fiasco I will take copies of my summary or better version, to London or Brighton, but will liaise with organisers, before then.
     
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  4. slysaint

    slysaint Moved to https://www.s4me.info/index.php

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    I think it would help more than just the UK.
    I was thinking more of signs /placards with 'retract PACE ' so that any media coverage might pick up on it and ask 'what is PACE'.

    eta: or t-shirts? (just thought; maybe this could also be a good method of fundraising too)
     
    Last edited: Mar 28, 2017
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  5. MEMum

    MEMum Senior Member

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    Both sound good. Last time many people were wearing #MILLIONS MISSING T-shirts or other red tops.
     
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  6. AndyPR

    AndyPR RIP PR :'(

    With perhaps "Open the #PACEgate and let the data free!" on the back?
     
  7. ahimsa

    ahimsa Moved to www.s4me.info

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    Maybe their online contact form would work?

    http://www.meaction.net/contact/

    I hope this helps!

    I don't know exactly how they are organized and whether there is a separate ME Action site for UK. But even here in the US the PACE trial has an impact. It needs to be retracted, really, but until then we should point out the horrible flaws.

    Spreading the word as part of ME awareness & MillionsMissing sounds like a good idea to me.
     
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  8. L.A. Cooper

    L.A. Cooper

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    Hi all!

    Apologies for confusion -

    Unfortunately, I'm not able to quite keep up with all the activity going on here, but to sum up:

    Europe is taking part in the 25th Anniversary of ME Awareness Day this 12th May with a variety of events. Here in the UK, we are preparing a number of MillionsMissing protests for the day, and are very excited about this!

    After some technical difficulties with MEAction emails, my own is now up and running again. So if there's anyone who'd like to get in touch about this, please do and I'll try my best to get back to you as quickly as possible! This means pointing you in the right direction if you'd like to lend a hand with anything as well...

    (la@meaction.net)

    Thank you. Take care and keep as well as possible.
    L.A.
     
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  9. AndyPR

    AndyPR RIP PR :'(

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  10. AndyPR

    AndyPR RIP PR :'(

  11. emsho

    emsho

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    Scotland
  12. AndyPR

    AndyPR RIP PR :'(

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  13. emsho

    emsho

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    @AndyPR that's my bad should be put up over the next few days :)
     
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  14. MEMum

    MEMum Senior Member

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  15. MEMum

    MEMum Senior Member

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    Bump. Some more info on above FB page.
    Think they will have info on demands on the day.
     
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  16. slysaint

    slysaint Moved to https://www.s4me.info/index.php

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    I've posted on another thread about this.
    Only found out yesterday that this week is 'Mental Health Awareness week' (in the UK at least)..........this could be very problematic for the #MM protests...................
     
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  17. SamanthaJ

    SamanthaJ Senior Member

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    Is this new? Have they just done this this year? V unfortunate, and, I can't help thinking, suspicious.
     
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  18. AndyPR

    AndyPR RIP PR :'(

    From a quick Google, no, it doesn't seem to be new. The organisation behind it dates back to 1949, https://en.wikipedia.org/wiki/Mental_Health_Foundation, and Wikipedia lists themes for the awareness week going back to 1995. Here, https://www.awarenessdays.com/uk/awareness-days-calendar/mental-health-awareness-week-2017-2/, claims "The Mental Health Foundation has hosted Mental Health Awareness Week in the second week of May since 2000."
     
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  19. SamanthaJ

    SamanthaJ Senior Member

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    Thanks, that's something of a relief, that it's not a cunning plan, just an unfortunate coincidence. UK media, especially the BBC, are giving mental health a lot of attention at the moment. Which is probably good for people with mental health problems (assuming it's accurate info), but potentially a bit of a headache for raising awareness of ME this week on an already crowded stage.
     
    Last edited: May 9, 2017

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