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What a year! Who do you want to thank? The Unofficial 2015 ME/CFS patient awards for...

Discussion in 'General ME/CFS News' started by Simon, Dec 23, 2015.

  1. Simon

    Simon

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    The Unofficial 2015 ME/CFS patient awards (#my2015MEawards)

    [​IMG]


    It's been an incredible year for mecfs. Francis Collins, the Director of the NIH, has pledged to get serious about mecfs. Investigative journalist David Tuller's detailed expose of flaws in the PACE Trial helped take it to a wider academic audience for the first time. Professor James Coyne took up the challenge and made waves in no time. The New York Times ran it's first editorial on mecfs. Many patients wrote moving accounts of their illness in the national media. The Open Medicine got two Nobel prize winners on board its new End ME/CFS project and has already launched and funded an amibitous study. #MEAction launched, and made things happen.

    And that's just a fraction of it! Who would you like to give an award to?

    RedCarpet-2400px.png


    One award per post, please, but make as many as you want.
    [​IMG] You can tweet your award too using #my2015MEawards (the link to your individual post is in the post number eg #1 in the bottom right hand corner, [right-click on the number to copy link address]). Thanks to @Bob for the hashtag idea.



    :balloons: Think of this thread as our Awards night, with a suitably celebratory mood. :balloons:

    If someone gets and award you don't think should have one, just go ahead and nominate someone you
    do think deserves an award. Thanks.

    Note that these awards are not a Phoenix Rising initiative, it's just a simple idea to say a big thank you to those who've done so much to advance our cause this year.
     
    Last edited: Dec 23, 2015
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  2. Simon

    Simon

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    The 2015 award for the Biggest and most important Promise made to patients goes to NIH Director Dr Francis Collins

    Collins says NINDS Director Walter Koroshetz [current mecfs lead] is “determined to move pretty fast on this,” including soon issuing a new request for proposals to the research community. “Give us a chance to prove we’re serious, because we are,” Collins says.

    Elsewhere Collins is quoted as saying "It will be substantially greater than the current five or six million a year," "We are going to ramp this up."

    And the NIH is already planning a study profliing patients whose mecfs started with an infection at its own clinical centre.

    NIH considering Ampligen and Rituximab trials | #MEAction update:
    Patients look forward to seeing the NIH programme ramp up to a size that matches the huge need.

    #my2015MEawards
     
    Last edited: Dec 23, 2015
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  3. Sasha

    Sasha Fine, thank you

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    The 2015 Award for No-Holds-Barred Activism in ME/CFS goes to Professor James Coyne.

    James Coyne joined the campaign to expose the bad science of PACE at the end of October with an article on his high-profile PLOS blog describing the study's long-term follow-up data as “uninterpretable”. Since then, he has been tireless, tweeting and blogging provocatively on all aspects of PACE. Slides from a public talk he gave on PACE in Edinburgh in November have been downloaded over 10,000 times.

    In the talk he said: “PACE really attracts my attention because it’s so goddamned bad. It’s bad in its conduct, it’s bad in its reporting, and it’s fascinating that it’s going unchallenged. And it’s uncritically being passed on by journalists and the media with clear harm to patients.”

    #my2015MEawards
     
    Last edited: Dec 23, 2015
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  4. Sasha

    Sasha Fine, thank you

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    The 2015 Award for a Brilliant Idea for Activism in ME/CFS goes to #MEAction.

    In May this year, patients Jen Brea and Beth Mazur launched #MEAction, an innovative online platform for patients, advocates and organizations to form an international network to fight for health equality for ME. They say that while patients "may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force", and so they've proved.

    Already thousands strong, #MEAction has a daily news bulletin, active forums for advocacy projects, and has provided a platform for many important actions including a record-breaking petition with over 11,000 signatures calling for misleading claims in the PACE trial to be retracted. And they're not even a year old!



    #my2015MEawards
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Wow!

    Although there are many possible winners (OMI, Lipkin, Hornig, Fluge&Mella, Ronald Dafoe)

    I would have to nominate Jonathan Edwards.

    The work he does here as a moderator, and as a professor, for me - it`s been invaluable.
     
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  6. Simon

    Simon

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  7. Simon

    Simon

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    We've skipped the nomination business, you get to make the award yourself! Others can like (and retweet using #my2015MEawards). There are just so many who deserve awards this year.
     
    Jennifer J, moosie, Asa and 4 others like this.
  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Oh right! Well that`s great :D I`ll make sure to peep a little tweet as well.
     
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  9. Dolphin

    Dolphin Senior Member

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    I nominate John Darvall in BBC Radio Bristol for the 2015 Award for coverage of ME in the local broadcast media.

    I don't have links to his coverage to hand but know he interviewed Naomi Whittingham (who has severe ME for around 25 years) twice in a sympathetic manner.

    Even did the Chilli ME challenge.

    If anyone has any links to what he did, please post.

    ETA:
    One link: http://www.bbc.co.uk/programmes/p02w3d9d

     
    Last edited: Dec 23, 2015
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  10. Sasha

    Sasha Fine, thank you

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    The 2015 Award for ME/CFS Citizen Scientist goes to Tom Kindlon and his fellow critics of PACE.

    ME patient Tom Kindlon realised, soon after the first PACE trial paper was published in The Lancet, what a pile of nonsense it was and started to study it, to study clinical trial methodology, and to write critiques to the medical journals, many of which have been published. He and other patients were working hard pointing out the flaws in PACE long before professional scientists came on the scene and they've been hugely influential in informing journalist-scientist Dr David Tuller's work and that of Professor James Coyne. Without them, the problems with PACE wouldn't have come to light.

    Both Tuller and Coyne have said that they're only saying about PACE what Tom and other patients have said. And now it's paying off, big-time. Read Tuller about Tom here.



    Congratulations on your award, @Tom Kindlon and your fellow citizen-scientists! :trophy:

    #my2015MEawards
     
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  11. Sean

    Sean Senior Member

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    And the You Are Not Shutting Us Up Award goes to... [drum roll]

    All patients.
     
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  12. user9876

    user9876 Senior Member

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    The 2015 Award for a Investigative Journalism goes to David Tuller

    For his long and carefully researched exposure of PACE
    http://www.virology.ws/2015/10/21/trial-by-error-i/

    [Edited with some better text but I'm not sure it's really needed as we all know what a fabulous piece of work David has done]

    David Tuller's journalism on Virology Blog in October started a cascade of efforts to get the notorious PACE trial called to account. His detailed critiques laid bare the serious problems with the conduct of the trial and its authors' failures to address the criticisms. He continues to write about the problem and is the co-author, with several prominent scientists, of a recent letter requesting raw data from the PACE trial under the Freedom of Information Act.

    His articles can be found here (his 2015 work begins with the "Trial by Error" series).
     
    Last edited: Dec 23, 2015
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  13. snowathlete

    snowathlete

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    The 2015 award for actually listening to patients then doing something about it, goes to @Jonathan Edwards. There are far too many ppl in a position to help in the UK who nevertheless do nothing, so his involvement is especially praiseworthy. My guess is it will lead to others in the UK following his example and we need that very badly. Massive in my opinion. And he's super generous with his time on the PR forums too.

    #my2015MEawards
     
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  14. Simon

    Simon

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    The 2015 Award for the most effective letter of the year goes to Brian Vastag

    Congratulations to @viggster for his brilliant, compelling and perfectly-targeted letter to NIH Director Francis Collins. Published in Slate Last Word on Nothing, it was soon picked up by the Washington Post. It was most certainly read and heard by Collins too.
    I’m disabled. Can NIH spare a few dimes? - The Washington Post

    I'm sure Brian would be the first to acknowledge he was builing on the work of many advocates over several years, but boy did he bring things to a crescendo. A few months later, Francis Collins announced the NIH would, for the first time, be taking the condition seriously and planned to ramp up research.

    Thank you, Brian

    Discussion thread
    #my2015MEawards
     
    Last edited: Dec 24, 2015
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  15. A.B.

    A.B. Senior Member

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    I believe the IOM report, on some level, has cleared the way for serious biomedical research. Collins probably needed it to justify his planned changes, which will translate to more funding for all the interesting stuff our high profile researchers want to do.
     
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  16. snowathlete

    snowathlete

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    The On a tenacious mission to END ME/CFS award 2015 goes to Linda Tannenbaum of the Open Medicine Foundation who does so much brilliant work she deserves several awards. Involved in many areas, always working smartly and with our interests at the forefront of everything she does, she's simply brilliant.
    #my2015MEawards
     
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  17. Tom Kindlon

    Tom Kindlon Senior Member

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    I nominate Mr Matthees for the best attempt to get PACE Trial data with a FOI request award.
    https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part.

    As people may recall, he has provisionally been successful although the PACE Trial team have appealed.
    His work is very impressive. I suspect the recovery rates as they defined them in the protocol will be a lot lower than what they published which used very loose criteria.

    Honourable mentions from this and other years to:
    @Anna Wood, Robert Courtney, Tate Mitchell, @Graham McPhee who all have done good (and thankless) work appealing rulings.
    [I'm probably forgetting people].
     
    Last edited: Dec 23, 2015
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  18. worldbackwards

    worldbackwards A unique snowflake

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    The 2015 Sisyphus award for endless chores goes to @charles shepherd, not because he's done anything special this year, but because he's done exactly the same thing he does every year - gone into battle to try, and very occasionally succeed, to get a better deal for ME patients in the UK and right some of the immense wrongs committed against us.

    It's a difficult, thankless task where success must often seem remote and too many are quick to criticise, but he's still plugging away on our behalf and for that I salute him.
     
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  19. Esther12

    Esther12 Senior Member

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    In that case, I don't need to feel guilty for:

    Most Horrifying Forum: Phoenix Rising.

    QMUL have started to mention us with a sense of dread in their submissions arguing against the release of data... as a public place where people (not necessarily even researchers - some are mere patients!) can look critically at research, discuss potential problems and reveal where researchers have spun or misrepresented their data, I imagine that we seem rather like the ravenous hordes of Mordor to them.

    What a wonderful thing to be a part of.
     
    Last edited: Dec 23, 2015
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  20. Tom Kindlon

    Tom Kindlon Senior Member

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    I nominate Invest in ME supporters for best all-volunteer fundraising team. They are very enthusiastic. They even have a subsection, Let's Do It for ME.
     
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