ME Global Chronicle: impressive new newsletter

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:

Leonard A. Jason, Ph.D. DePaul University - Chicago, USA

“The future of the field is in connecting the many patient and
scientific groups into one larger body that is united for change.
Any events that bring people together across countries and
organizations should be promoted.

The message is simple, we have more impact with numbers, and when we flex
our collective muscles, then we become a movement like the civil rights,
women’s and disability revolutions of the 60s, 70s and 80s.

The HIV/AIDS groups changed policy throughout the world, but they did it by
keeping their focus on critical issues and demanding change, and although the
voices in that movement were also divided, for a few things like increased
funding and provision of services, they were all together.”
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)
 
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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.
 

SOC

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Latest edition attached :)

Lenny Jason is an advisor.
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.
 
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*GG*

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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
 

Firestormm

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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
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 :)
 

Firestormm

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

The editorial team doesn't accept any responsibility for any possible incorrect information that it has been supplied with and which has been published in this monthly issue.

Anyone can subscribe to this free magazine by sending their emailaddress to: subscribe@let-me.be

You can un-subscribe by sending a mail to: unsubscribe@let-me.be

Textual contributions for the March issue need to be supplied in Word by March,12th and sent to: contribute@let-me.be

The next issue will come out on March, 27th 2014.
 
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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.
Egan and Wijbenga share the view that CFS = ME.
 
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Firestormm

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Egan and Wijbenga share the view that CFS = ME.
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.
 

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.
 

*GG*

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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.
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