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The Hornig/Lipkin cytokine study is out! Let's light up the internet with calls for biomed research!

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 27, 2015.

  1. Sasha

    Sasha Fine, thank you

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    The press embargo on this lifted two minutes ago!

    Full press release here.

    Stories will soon be appearing so let’s take advantage and act to call for donations, for the NIH to increase funding to $100m/year and for congresspeople to get involved.

    Here’s how you can help.

    (1) Keep an eye out for stories and post links on this thread.

    I’ll update this post with a list. The CII will be trying to update their Facebook page with links to stories here, and so will the Microbe Discovery Project.

    If you’re outside the US, look out for coverage in your own country!

    Story list

    Global: Yahoo News
    Global: Medical Express


    US: Wall Street Journal

    UK: Independent
    UK: Telegraph
    UK: Daily Mail


    France: Le Parisien

    Not commentable: New Yorker



    (2) Click through to the stories

    Give them traffic so they’ll give us more ME/CFS stories.


    (3) Post a comment on the news-site calling for donations, funding and action by congress

    We want ACTION out of this! So let’s tell people what they can do to help us.

    Get in quick as you can so that people see our messages and so that we set the tone.

    TOP TIPS:
    • Thank the journalist.
    • Keep it short – people don’t read long stuff. If you’ve got multiple points, do multiple posts.
    • Don’t rant. :)
    • Push the positive – present this as a solvable problem that the reader can help. We just need the money and the political will! Researchers are raring to go!
    • Do not feed the troll! We’re getting good at this. Don’t engage – just politely direct people to the latest research which they’re unaware of. Cite the IOM report. :cool:
    That’s it! Go, go, go! :rocket:
     
    Last edited: Feb 28, 2015
  2. charles shepherd

    charles shepherd Senior Member

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    NK17, snowathlete, barbc56 and 2 others like this.
  3. Scarecrow

    Scarecrow Revolting Peasant

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    Last edited: Feb 27, 2015
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  4. Kina

    Kina

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    Please note there is also a thread here regarding the study.
     
    Last edited: Feb 27, 2015
    snowathlete and Sushi like this.
  5. Scarecrow

    Scarecrow Revolting Peasant

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    Last edited: Feb 27, 2015
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  6. Sasha

    Sasha Fine, thank you

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    beaker and oceiv like this.
  7. Denise

    Denise Senior Member

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  8. Scarecrow

    Scarecrow Revolting Peasant

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  9. oceiv

    oceiv Senior Member

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    I read in an NYT article about their commenting system, that articles will either have comments or no comments from the start. The editors choose a certain number of articles per day to get comments. The decision is based on a number of factors. They don't have enough staff to let all of their articles have comments, because NYT comments are moderated.

    But NYT does frequently publish letters to the editor and are more likely to publish those if they get a lot on any given article. On the following link, you can find the letter to the editor instructions: http://www.nytimes.com/content/help/site/editorial/letters/letters.html Also there is an article with tips to getting your letter published: http://www.nytimes.com/2004/05/23/opinion/23READ.html

    From my observation, very high-traffic NYT articles often lead to another article being written on the same subject soon afterwards. They capitalize on high reader interest. This is the third CFS/ME article in a short period of time. I wish Lipkin's leptin study had also gotten this type of immediaite press. It's a great sign that this article was published so soon after study publication.
     
    Last edited: Feb 27, 2015
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  10. SOC

    SOC

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    Great suggestions, @Sasha! And thanks for the very useful tips!

    I am highlighting this particular suggestion because it is critical for keeping good media articles coming and it's incredibly easy, so even the most disabled among us can accomplish it.
     
    beaker, Snowdrop, Scarecrow and 2 others like this.
  11. Sasha

    Sasha Fine, thank you

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    Hi guys - had to go and lie down in the dark and I've only just woken up again having missed all the excitement! Sorry I wasn't here to update the thread with places to post comments.

    Hope there might be more today.

    Great idea about a letter to the NYT @oceiv - and thanks @SOC!
     
    oceiv likes this.
  12. Kati

    Kati Patient in training

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    Sasha, I had a thought for you. These kind of days can be stressful for all of us, even if it's sheer excitement. Rumors flew when someone broke embargo. now we know. I decided to get out and breathe fresh air for a while and not remain completely glued to my screen. The news will be waiting when you emerge from the other side of your migraine. Take good care of yourself.
     
    Last edited: Feb 28, 2015
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  13. Sasha

    Sasha Fine, thank you

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    Thanks, @Kati - I had stupidly got dehydrated earlier in the day and it was already building up - and then the multitasking did for me! Ah well. Thanks for your kind thoughts!
     
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  14. Sasha

    Sasha Fine, thank you

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  15. Sasha

    Sasha Fine, thank you

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  16. Sasha

    Sasha Fine, thank you

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    Kati likes this.
  17. Sasha

    Sasha Fine, thank you

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  18. Marco

    Marco Grrrrrrr!

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    Thanks Sasha

    Google translate did a fair job and only needed a little tinkering (happy to be corrected by any real Francophones) :


    Chronic fatigue, a biological disease, not psychological



    Chronic fatigue is a biological, not psychological illness, which can be identified by markers in the blood, according to a study published on Friday, which nourishes the hope of better treatment.

    This discovery is "the first solid physical evidence" that this syndrome is "a biological disease and not a psychological disorder" and that the disease has "distinct stages," say the authors of this research from the Mailman School of Public Health at Columbia University.


    The study is published in Science Advances journal. With no known cause or treatment, chronic fatigue syndrome of chronic (also) known as myalgic encephalomyelitis (ME / CFS) - has long puzzled scientists.


    It can cause extreme fatigue, headaches, difficulty concentrating, and muscle aches.


    "We now have confirmation that the disease known as ME / CFS that affects millions of people is not psychological," said Mady Hornig, associate professor of epidemiology at the Mailman School and lead author of the study.


    "Our findings should speed up the process for diagnosis (...) and to discover new treatments focusing on these blood markers," (she said welcoming the findings).


    Researchers tested the levels of 51 immune system markers in the plasma of 298 patients and 348 healthy people. They found that the blood of patients with the disease for three years or less contained higher levels of molecules called cytokines. In contrast, the blood of patients with the disease for more than three years did not show that level of cytokines.


    The link seems unusually strong with a cytokine called interferon gamma, related to fatigue after many viral infections," according to the study.


    However cytokine levels do not explain the severity of symptoms, which fluctuate daily. Patients suffer some days and other days not at all.


    "It seems that patients with ME / CFS are hit hard by cytokines up to the third year or so. At that time the immune system shows signs of exhaustion and cytokine levels are falling," said Ms. Hornig.


    This finding may support the theory that the disease hits vulnerable patients who contract common viruses such as Epstein-Barr, originally mononucleosis, and fail to recover.
     
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  19. Sasha

    Sasha Fine, thank you

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    Fancy posting a comment, @Marco? Doesn't even require registration, if memory serves!
     
  20. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Not really my thing Sasha.
     

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