Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Action alert: Brian Vastag's appeal to the NIH is in the Washington Post - HELP BOOST IT!

Discussion in 'Action Alerts and Advocacy' started by Sasha, Jul 20, 2015.

  1. Sasha

    Sasha Fine, thank you

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    [Mods: please don't merge this action alert with any other thread about Brian's article - thanks!]

    Last week we all read journalist ME-patient Brian Vastag's brilliant, eloquent letter to Dr Collins of the NIH - "Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?" - and saw it get retweeted via his journalist connections to an audience of over 670,000.

    Now it's been reprinted in The Washington Post! That's one of the US's biggest newspapers (circulation 470,000) and is read by the political movers and shakers in Washington (the US capital and seat of government).

    We need to boost it by visiting the page to give it traffic, tweeting, Facebooking, and commenting online in support of it. And we need to tell people how they can help us. Let's get some action from them!

    Here's what to do

    (1) Visit the page!

    (2) Share the article on Twitter and Facebook by clicking on the Twitter/Facebook icons at the top of the article. Here's the Washington Post's own tweet about the article, which you can retweet.

    (3) ‘Favourite’ and retweet the tweets of the prominent journalists and others who have tweeted the link to Brian’s article.

    (4) Tweet a message to Dr Collins @NIHDirector with a link to Brian’s Washington Post article and ask him to help ME patients.

    (5) If you're in the US, tweet your congressperson (find them here).

    (6) Put up high-quality comments on the article. Here's how to do it. [Edit: weblinks are allowed, apparently (just not mine :oops:).]

    Online comments can:
    • back up the points that Brian makes;
    • link to the #MEAction petition for funding equality;
    • talk about the fantastic research that's ready to go by Dr Ian Lipkin's team at Columbia and Dr Ron Davis's Nobel-Laureate-stuffed group at END ME/CFS, as soon as they get the money;
    • mention our fantastic biomedical research charities (particularly the major US ones with the big names such as the Microbe Discovery Project and END ME/CFS);
    • talk about the need to replicate the Norwegian rituximab work;
    • agree that it's ridiculous that ME/CFS is in the Office of Research on Women's Health and that it needs urgently to move into a more appropriate institution with a big budget;
    • and so on.
    This is a big, big opportunity for us. Go, go, go!
     
    Last edited: Jul 20, 2015
    rosie26, Mogwai, frenchtulip and 28 others like this.
  2. Sasha

    Sasha Fine, thank you

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    I've managed to get the first comment up! :trophy:

    If we 'like' good comments I think it might help them to stay at the top of the pile where readers can see them.

    I'm very keen that the people who read this article take action. We want them tweeting the heck out of Director Collins and donating to our biomedical research charities.

    Get cracking, my friends! The balloon is up (I don't actually know what that means, but doesn't it sound exciting!).

    :balloons:
     
    Last edited: Jul 20, 2015
  3. Sasha

    Sasha Fine, thank you

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    There's more in the pipeline to take advantage of this letter so stay tuned this week... but for now, this is our job! Pile on, everybody! Get tweeting/FBing/commenting...

    And click through to Brian's article. Give it shedloads of traffic so that the Washington Post sees it's well worth its while to run this kind of thing.
     
    frenchtulip, leokitten, SDSue and 7 others like this.
  4. Sasha

    Sasha Fine, thank you

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    Excellent comment up by @Simon now. Well done, Simon! :balloons:
     
    Sushi, Esther12, Simon and 2 others like this.
  5. Simon

    Simon

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    My comment is here

    Says
    but please get over there, like any comments you agree with, maybe post your own and share, tweet, whatever the article. we need to make the most of this opportunity.
     
    Izola, rosie26, SOC and 9 others like this.
  6. Bob

    Bob

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  7. Snookum96

    Snookum96 Senior Member

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    Shared on my personal and website fb pages:)
    I don't know how to tweet perhaps it's time I learn.
     
    Izola, justy, Esther12 and 2 others like this.
  8. Sasha

    Sasha Fine, thank you

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    Some great comments up now - like 'em, tweet 'em, post your own... it's all happening over there! :)
     
    Scarecrow, RL_sparky and Esther12 like this.
  9. Bob

    Bob

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    Kati, RL_sparky, lycaena and 3 others like this.
  10. Bob

    Bob

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  11. Sasha

    Sasha Fine, thank you

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    lycaena, Bob and Simon like this.
  12. Kina

    Kina

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    justy, Valentijn, SOC and 5 others like this.
  13. Bob

    Bob

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    Valentijn, Sean, Kati and 2 others like this.
  14. JamBob

    JamBob Senior Member

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  15. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    @Sasha
    Links ARE allowed!!!

    Not sure why you were being blocked. did you sign up for an account before commenting?

    Anyways, link away people!
     
    Bob, Sasha, lycaena and 1 other person like this.
  16. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    also, there are starting to be some trolls in the comments (though fairly tame as these things go). More comments needed!
     
    Sasha likes this.
  17. Sasha

    Sasha Fine, thank you

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    Thanks - I've edited my post - and I did sign up for an a/c first. Don't know what the issue was.
     
  18. Sasha

    Sasha Fine, thank you

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    Never feed the trolls, guys! Here's my advice on trolls from that how-to page:

    • Do not feed the troll! Don’t engage – just politely direct people to the latest research. Again, cite the IOM and P2P reports. “I get tired too and I just suck it up – you’re all just a lazy bunch of scroungers” should be met with, “It’s important to distinguish between ME and just being chronically tired. ME has many other symptoms than fatigue, including neurological and immune symptoms, and is a serious, disabling multi-system disease. This has been demonstrated in research summarised in the latest report from…” etc. etc. Play it like a rational adult and let the troll look like the stick-poking child that they are. Talk over their heads to your real audience and…
    • Always remember who your intended audience is. It isn’t trolls or people who are incapable of being convinced. We’re talking to patients who might not be aware that our community exists and to the 99% of the general public who will be persuaded by good evidence. We want all of those people on board with us, advocating, educating others and donating to our charities.
    Seriously, if you feel angry, just DON'T POST :eek:. Calm down...and let other people take up the slack. Lots of us are on the case. :cool:
     
    Valentijn, SOC, Sean and 6 others like this.
  19. Sasha

    Sasha Fine, thank you

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    Just caught up on this. Yes, there are some trollish comments but most seem so transparently bizarre that I think anybody normal reading them (our target audience, not the trolls themselves) will see right through them).

    Probably best to ignore them and talk right over their heads as if they're not there.
     
    Simon and searcher like this.
  20. Nielk

    Nielk

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    I am amazed at the comments saying that it is audacious to ask for funding for a specific, personal disease. Who are these people???
     
    halcyon, justy, Valentijn and 7 others like this.

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