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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Advocacy in the UK

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Aug 29, 2016.

  1. worldbackwards

    worldbackwards A unique snowflake

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    Another I thought of - "All in the Mind" (trad. arr. Wessely/Sharpe)
     
  2. slysaint

    slysaint Senior Member

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    'ME/CFS, It's not all in our heads' chants quite well.

    'ME sufferers are dieing to be taken seriously'.....literally
     
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  3. sarah darwins

    sarah darwins I told you I was ill

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    I'm going to say what I think. Feel free to reciprocate:

    Way too subtle!

    Cynics will say "How do you know?"

    We know that, but the mainstream will assume that it's hyperbole. People think they know what ME is, and they're pretty sure it's no big deal because someone they knew once had it.

    Anything that sounds like a victim statement is not going to work. Campaigns in this area need to be specific or/and constructive, and try to avoid anything that sounds like whingeing.

    And we have to start giving government and health administrators a reason to change. That's why I think emphasizing the way the UK is sinking into a babbling backwater while places like Stanford and Columbia are driving forward into exciting areas of research is the best way forward. I just don't know how to make a good tune out of that.
     
  4. worldbackwards

    worldbackwards A unique snowflake

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    Keep thinking about this every time I see the title of this thread

     
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  5. AndyPR

    AndyPR Senior Member

    I did initially struggle for a thread title that I liked and then the 'bad pun' area of my brain sprung to life ;)
     
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  6. AndyPR

    AndyPR Senior Member

    I am an advocate
    I am an anarchist
    I know what I want
    And I know how to get it
    I wanna destroy bad science

    Cause I
    Wanna be
    Advocacy
    No bollocks psychology
    .
    .
    How many ways to get what you want
    I use the best
    I use the rest
    I use the enemy
    I use advocacy

    ;)
     
  7. slysaint

    slysaint Senior Member

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    The UK's sinking, Kumbaya
    Into a babbling backwater
    While Stanford and Columbia
    Are driving forward, Kumbaya
     
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  8. sarah darwins

    sarah darwins I told you I was ill

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    Oo, you just had to, didn't you! :mad:

    I should have known I would regret revealing my feelings towards that song. :rolleyes:;)
     
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  9. AndyPR

    AndyPR Senior Member

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  10. L.A. Cooper

    L.A. Cooper

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    Ditto @JaimeS

    I think for me personally, I would (and often do) suffer relapses, some significant for the cause and to be heard. I would take my best day and walk through London until I had to drag myself across the concrete in searing pain. I'd freely do a lie in, risk getting arrested, tie banners to government houses, camp outside medical practitioners' doors, anything.

    But there are a lot of people BARELY keeping their head above water who can't make those sacrifices that I am willing, and as much as I wish we could facilitate these sorts of movements, I also recognise that it's far too much to ask of a lot of people. Of course, there's also that narrative of "Oh, look at these militants, causing havoc in our good British streets, shame on them."

    I think one thing I can say for the UK is that we struggle with being heard. US activists seem to have a really good hold on meeting with senators and representatives, being seen, being heard and imparting their knowledge, and I know that that's something that they've worked really hard on so kudos to them. But here? Can't even get people to write back. Will definitely work on it though, because I think that's a really weak point that could be resolved.
     
  11. BurnA

    BurnA Senior Member

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    Here is what I think.

    We need attention. Writing a letter to an MP won't get us attention. We need to block traffic on a motorway, we need people on the top of rooftops, or chained to railings etc. We need to get the media talking about us - then they might investigate.

    All publicity is good publicity when you have science on your side. Yes there might be a bit of a ruckus to begin with but that will be forgotten when the truth emerges.


    ETA: another alternative is you tube videos. Well made 1-5 min clips, funny, insightful, documentary style etc. will all work. All on one channel. Get some celebrities or academics involved.
     
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  12. JaimeS

    JaimeS Senior Member

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    I would do this!

    Of course you just heard I would chain myself to something, so... well, maybe some ppl consider cameras more intimidating!
     
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  13. AndyPR

    AndyPR Senior Member

    Just a quick thought I've had @L.A. Cooper - do you know if the guys behind the Bristol Millions Missing demo have tried to get in touch with John Darvall from BBC Radio Bristol? I believe he has covered ME as a topic a number of times on his radio show in a favourable way.
     
  14. actup

    actup Senior Member

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    @JaimeS sorry for late response to "any thoughts" on how to effectively protest. Coming out of crash after an unfortunate encounter with a yellow jacket hive -eight stings and lots of diphenhydramine=lots of sleep ;-)

    I believe we're at a point in time where lawsuits might the be most effective form of protest. I've been waiting for certain catalysts like the recent solid biological research findings from Dr. Naviaux and political change
    as in the discredited PACE trial.

    There must be many experienced lawyers with milder cases of me/cfs or with family members afflicted with me/cfs willing to help but unable to participate without support and direction. What about a non profit me/cfs legal organization ( selecting cases and delegating manageable tasks amongst it's members).

    I plan to try and find an attorney who will take my case against a large, respected clinic in my area which has a policy of strongly discouraging me/cfs and fibromyalgia patients from seeing specialists. The Rheumatology and Physiatrist depts out and out refuse to see patients with above diagnoses even with referrals. I've probably had psoriatic arthritis for ten years but was only recently diagnosed by an outside Rheumatologist. The multiple joint damage is severe, irreversible and causes a chronic mod-high pain level. Oh and I still have me/cfs. The symptoms of both illnesses have some overlap but my rheumy doesn't think my lower body muscle pain, daily flu symptoms, cognitive problems or severe PEM are related to the PA diagnoses.

    My son who is an attorney (he has me/cfs) in another state believes I have a good case. He can work with a local attorney and help with the case.

    There must be many thousands of pwcs out there with equally good or better potential cases. Are there any attorneys, lawyers or barristers out there who might be willing to weigh in on this form of protest ( lawsuits)?
     
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  15. L.A. Cooper

    L.A. Cooper

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    Andy, I don't know, but this is a really good point, thank you. I'll bring it up; John Darvall is a huge ally.
     
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  16. AndyPR

    AndyPR Senior Member

    #MEAction UK have just posted this sample letter as something that could be sent to your MP in support of MillionsMissing, and, obviously, it's possible to use it as a template letter if you wanted to focus on something else.

    Use this link if you need to find the contact details for your MP - http://www.parliament.uk/mps-lords-and-offices/mps/

    Link to the original note on Facebook https://www.facebook.com/notes/the-meaction-network-uk/millionsmissing-mp-letter/1668403666810923
     
  17. Cinders66

    Cinders66 Senior Member

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    I think as someone mentioned saying that uk just funds psychosocial research will just get a reply pointing out the 5 or 6 biomedical projects MRC have funded of worth past few years and an excuse that it's not enough but it's an emerging field, trying to gain interest cMRC holds a conference etc.

    I've written letters to Doh, MRC, MP in the past but never get past that brick wall and crumb thrown that they're trying to do something

    I think the point to emphasise is how naff that in effort is comparwd to need, the #MEACTION letter above is good for that and also that they could do more. They could scrap Oxford criteria polluting the literature with discussions on how cbt can be refined and tailored etc as if enough etc, really the NICE criteria should be scrapped to put us on equal field as the rest of world research, and they could again ring fence cash. Mrc Will say they don't usually do this but a) they have done for other needy areas eg HIV, b) parliamentarians2007 said they should ring fence millions, they didnt c) the 2012 RFA was successful d) after the 2012 funding even AFME said to get the field established we needed more RFA and MRC refused. It's not that they are doing all they can , they just aren't. They are plodding on with an approach and result indistinguishable from deliberate dawdling.
    Ending their favouring of wide encompassing cfs umbrellas (very different to usa & Australia) would also help the illnesses to be better and more accurately understood and more respected. "Fatigue spectrum" language obscures the wide ranging symptoms and potential to cripple.
     
    Last edited: Sep 14, 2016
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  18. Countrygirl

    Countrygirl Senior Member

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    I think this is the correct place to place this post.

    This is a report of IiME's (attempted) meeting with the CMOs (Chief Medical Officers.......... who didn't actually turn up :bang-head:) in January 2017.


    http://www.investinme.org/IIME-Newslet-1701-01.shtml
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    So Dr Nigel Speight and
    • CMO Scotland
    • CMO Northern Ireland
    • CMO Wales
    are the ones who didn't turn up?
     
  20. Jo Best

    Jo Best Senior Member

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    MEMum, MeSci and Valentijn like this.

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