1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

ME Global Chronicle: impressive new newsletter

Discussion in 'General ME/CFS News' started by Simon, Feb 27, 2014.

  1. Simon

    Simon

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    I've just come across an impressive new monthly newsetter, The ME Global Chronicle

    There's a great short editorial from Lenny Jason:

    It also features reviews of the IOM contract, news from the USA, Ireland, Denmark, UK - and major fundraising appeals underway. Also a short piece from Jen Brea of Canary in a Coalmine fame, who won the ProHealth advocate of the year award.

    What I like most about the newsletter is that although it covers a lot of ground, it's well laid out and the articles are pretty short: most are a few hundred words and the longest only just over a thousand. Very ME-friendly reading.

    How to subscribe (free)
     
    WillowJ, beaker, rosie26 and 9 others like this.
  2. Firestormm

    Firestormm Guest

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    Cracking resource. Cracking initiative :thumbsup::balloons:
     
    aimossy, Nielk, Simon and 1 other person like this.
  3. SOC

    SOC Senior Member

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    Any idea who's behind it?
     
  4. Firestormm

    Firestormm Guest

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    Latest edition attached :)

    Lenny Jason is an advisor.
     

    Attached Files:

    aimossy and Valentijn like this.
  5. philpot

    philpot

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    A step in the right direction Simon, it would also help to convey the true size of the issue. Also we would have access to more data and which I feel is neccessary to help in finding a solution to such a complicated illness. Regards.
     
    aimossy, Simon and Firestormm like this.
  6. SOC

    SOC Senior Member

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    Thanks, Firestormm!

    Does anybody know anything about the editors, Eddy Keuninckx, David Egan, and Rob Wijbenga? I would like to be confident that this is completely on the up-and-up as well as in line with my thinking about ME/CFS before I give them any email address. There's so much (supposed) ME and CFS crap out there these days, that I'm always careful about people wanting to send me stuff. :cautious:

    ETA: Just to be clear, this first newsletter looks great. I'm not trying to suggest otherwise, just that I like to know who's behind things I'm supporting.
     
    Last edited: Feb 27, 2014
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  7. Firestormm

    Firestormm Guest

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  8. SOC

    SOC Senior Member

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  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So it's not a newsletter where you plug in your email, and they send you info when they want? If it is, I am not seeing it.

    GG
     
  10. JT1024

    JT1024 Senior Member

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    Interesting information... Thank you for sharing!
     
  11. Firestormm

    Firestormm Guest

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    You subscribe - the details are on page 2 (if memory serves) and it is published monthly. The articles are submitted with a deadline for acceptance and then if accepted inclusion in the next edition. Next edition is (I think) 27 March. But it tells you all this I believe in that pdf. I attached above. Sorry, I can't be exact without looking and am shattered already :)
     
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  12. Firestormm

    Firestormm Guest

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    OK So I checked, and here are the details (from page 2 as I said of the above pdf.):

     
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  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks, will look into this later.

    GG
     
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  14. alex3619

    alex3619 Senior Member

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    I saw this yesterday but didn't look into it then, I am in a crash though improving. We need something like this. Lenny Jason has looked deeply into the politics and advocacy angle, one of the few who have, so its good he has some input.
     
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  15. Guido den Broeder

    Guido den Broeder *****

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    Egan and Wijbenga share the view that CFS = ME.
     
    Last edited by a moderator: Mar 4, 2014
  16. Firestormm

    Firestormm Guest

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    Can you provide some evidence for that please Guido? I thought - from my exchanges with him - that Egan was a staunch 'ME is ME' advocate, but I'd be happy to be shown wrong, and from the content of the magazine I have read - there was nothing that raised my concerns over any - how shall we say - 'diluted' views or even any taint of psycho-social-ness. I have a lot of time for Lenny Jason as well and I must say my initial exchanges with Rob have been very productive with regard to getting the Lipkin campaign profile raised.
     
    SOC likes this.
  17. Simon

    Simon

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    March issue of the ME Global Chronicle is out now

    Llewelyn King on the NIH and an elusive disease (p16), the Lipkin Crowdfunding appeal (p30) a round up of ME news from around the planet and much much more.

    Very readable and beautifully presented, as ever.
     
  18. Rob Wijbenga

    Rob Wijbenga

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  19. Simon

    Simon

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    The April edition of the ME Global Chronicle is out now: download (direct link) [subscribe]

    Another cracking edition. Highlights for me were:
    • Llewelyn King' ME/CFS Manifesto. He makes an eloquent call for ME/CFS patients to engage with Washington DC to make a difference, particularly to the paltry levels of funding ($5m from the NIH this year). He says $1m is needed to set up a lobbying operation on Capitol Hill, which would start to pay off within a year. [page 14]
    • Abstract of David Tuller's New York Times piece on how CFS Research (and Dr Lipkin in particular) is turning to crowdfunding [page 8]
    • Dutch International Project - Science to Patients Charles Shepherd and Nigel Speight added to their portfolio of YouTube videos [page 19]
    • Lenny Jason "Diseases can stigmatize" [page 39]
    • International round up
    • ME Awareness day action [page 41]
    However, the authors are struggling with the immense workload and are appealing for volunteers to help - more info in the newsletter.
     
    Iquitos, WillowJ and Bob like this.
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So should we spend $1 Million on lobbying in the hopes of securing a greater amount from the already bankrupt USA (17+ Trillion in National Debt and deficits of about $500 Billion per year in the forseeable future) or should we fund our own research, and possibly have more control of what gets funded and probably have a more responsive entity to our needs, wants and demands?

    GG
     
    Firestormm likes this.

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