International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Any suggestions for a placard for #MillionsMissing in London 12 May

Discussion in 'Upcoming ME/CFS Events' started by MEMum, Apr 28, 2017.

  1. MEMum

    MEMum Senior Member

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    Last edited: Apr 28, 2017
  2. helperofearth123

    helperofearth123 Senior Member

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    I don't think people will know what "The Tragedy of Pace" means, but i guess it could lead to them asking questions. Some ideas:

    - "Biomedical Funding not talk therapy for a physical illness" (might be too long)
    - "We need medical research!"
    - "As bad as AIDS - Dr Kilmas"
    - "Most of us are too ill to protest"
    - "ME/CFS Needs WAY more funding!"
    - "Fund ME/CFS biomedical research!"
    - "25% of us are BEDRIDDEN!"

    Some of them are quite similar but I guess we really only have one primary message which is for more funding for the biomedical research.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Well if it's PACE you'd like to highlight, how about

    #PACEtrial
    Trial by Error
    www.virology.ws

    PACE claims
    NOT justified
    says London Tribunal

    The TRAGEDY of PACE is nice and succinct (and true)
    the above are a bit longer I know but might pique people's interest.

    Anyway, if you go I hope it goes well.
     
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  4. A.B.

    A.B. Senior Member

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    In CFS, the tobacco scientists won!

    Okay this will just confuse people.

    Maybe: "Public health policy for CFS is based on fraudulent research".
     
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  5. Yogi

    Yogi Senior Member

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    keep it simple.

    #PACEtrial is a FRAUD.


    people can then google it and all the articles should come up and they can also go onto twitter with that # .
     
  6. Old Bones

    Old Bones Senior Member

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    I like the #PACEtrial suggestions. How about:

    #PACEtrial
    Harms ME

    or

    #PACEtrial
    Kills ME
     
  7. Somer

    Somer

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    Where's our biomedical research money going?
     
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  8. Cheesus

    Cheesus Senior Member

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    How about "We won't take this lying down".

    It has a double meaning... kind of.
     
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  9. MEMum

    MEMum Senior Member

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    I'm loving these suggestions, keep them coming
    I could be transporting a lot of banners at this rate

    I am also still working on a 2-sided handout with US IOM statements on disease defn etc and a couple of sentences on recent research results on one side and Summary of Errors re PACE on the other.

    Comments from a friend yesterday and seeing what Sutton ME Clinic are saying re ME are spurring me on with this.
     
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  10. NelliePledge

    NelliePledge plodder

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    PACE is fake science
    Stop GET now
    FitNOT


    (Showing my age with this one)
    we don't need your education
    we don't need your thought control
    Hey Crawley leave those kids alone
     
    Last edited: Apr 28, 2017
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    GET stuffed
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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    PACE off
     
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  13. NelliePledge

    NelliePledge plodder

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    Made me hear Catherine Tates Cockney nan's voice saying this. :thumbsup:
     
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  14. daisybell

    daisybell Senior Member

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    ME is 'a serious,chronic, complex and systemic disease' (IOM report).
    It is not 'tiredness'
    Increasing exercise can be HARMFUL.
     
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  15. Somer

    Somer

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    ME: it's political

    ME: it's complicated
     
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  16. arewenearlythereyet

    arewenearlythereyet Senior Member

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    How about

    Treatment to get us off the couch not put us on it!
     
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  17. TiredSam

    TiredSam The wise nematode hibernates

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    it could be ME
    it could be YOU
    it could be ANYONE
     
  18. PatJ

    PatJ Forum Support Assistant

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    #PACEtrial: learn how to GET sicker.

    #PACEtrial: millions wasted.

    #PACEtrial your way to worsened health.

    #PACEtrial: How science looks in a post-truth society.

    #PACEtrial: Your worse outcome is our 'recovered'.

    #PACEtrial: $8 million worth of bad science

    #PACEtrial: Piece A Crap Experiment

    #PACEtrial: What false science beliefs look like.
     
    Last edited: Apr 29, 2017
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  19. Cinders66

    Cinders66 Senior Member

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    I probably would not have loads of PACE banners at a general protest where many might not actually know what you're talking about. A specific protest at a good location about PACE might be good idea though. PACE could be gone into in leaflets or if people ask the issues we have with CBT on offer etc.
    However pats above ^^^ are great ideas.

    One issue from a UK previous missing millions demo in terms of feedback from an MP passing by was they were not clear what the protest was actually about. Whilst people can go to google etc to learn very few will do.

    I think looking at photos from the US rallies:
    an Impressive use of slogans, soundbites and pictures got across the human suffering and loss - engages public interest and sympathy,
    targeted specific intstitutions with specific criticism and demands - NIH on funding and so on.
    Having a short list of clear demands was very media friendly too and got away from just another awareness or protest but actually offered up a plan how things should be better.

    If you want to criticise UK behavioural approach to serious biological illness or criticise the poor science and model it's based on, here's some ideas although being concise/ punchy isn't a great gift of mine-

    M.E needs more than GET - get real

    CBT is not cure for systemic disease, fund M.E biological research

    We are sick not deconditioned,

    Stop fobbing ME/CFS off with inadequate behavioural therapies

    Severe pwME are confined to bed - CBT & exercise are not the answers

    We need more than CBT, take M.E seriously

    M.E needs biomedical research not just talking therapies

    Behavioural therapies not solution for M.E

    250,000 sick - stop neglecting us

    This is systemic disease not fatigue. Do more for M.E.

    30 years of CBT and thousands still sick. We need biomedical research.

    Having M.E = missing out on life. Help us!

    Sick, in pain, with high disability - stop pretending exercise & CBT are the answer

    Stop wasting lives and money by failing to fund M.E biological research

    The Severely affected are severely neglected #stop ignoring severe M.E



    I'd also try highlight the impact
    Quoting stats of numbers unable to work which are shocking, the quality of life scores, people are unable to socialise, kids unable to attend school.


    Get across the many symptoms beyond fatigue , especially pain which many don't realise

    Quite shocking Quotes like
    "for me a good day is one I can wash my own hair"
    "On bad days I can't move & am in 10/10 pain "

    For pictures TYME Trust do a good poster of a tube-fed child saying you think this is just fatigue?

    A picture of someone weak in a wheelchair with ear defenders or something saying the treatments on offer are pathetic would be good.

    Unfortunately there's so much or get across and even with CBT, blanket statements on inefficacy won't work as the other side will just trot out arguments about the thousands helped so it's difficult to get into nuggets.

    Maybe there's some people who've worked in PR or advertising who could step in with help to get clear messages out there ?

    If it's in 2 weeks, ME action UK, whatever team they now are, I haven't seen them engaging with the community on direction or publicity, is it left up to individuals attending ? They haven't responded to my post on their Facebook, probably as it wasnt 100% supportive of past protest desigsn & outcomes.

    Anyway
    Best of luck
     
    Last edited: Apr 29, 2017
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  20. Valentijn

    Valentijn Senior Member

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    I like this one :)
     
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