ME Global Chronicle: impressive new newsletter

Simon

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June Issue of the Global Chronicle out now, and it's another goodie:

For me, the highlight is Llewelyn King's brilliant proposal for a "Mothers for ME March on Washington" wearing Blue Sashes, slated for May 12 next year, ME Awareness Day.
I envisage about 100 mothers of ME/CFS sufferers walking through the Capitol
wearing distinctive sashes; a very dignified demonstration -- with lots of
handouts for anyone who wants one.

Marchers don't have to be confined to mothers. But if mothers predominate,
there will more media attention than if it is just a general demonstration. I think
if everyone is wearing, say, white with a blue sash, and women far outnumber
men, that will have impact.

There is a long and effective history of mothers en masse changing history:
South Africa and Northern Ireland are two examples.

The aim of this demonstration should be to inform the 113th Congress and serve
notice on the agencies of government that the ME/CFS community wants parity
in research dollars with other diseases that are more in the public eye – and
right now.


This demonstration – and there is nearly a year in which to plan it -- should be
seen as the beginning of something big and enduring, not just a one-time or
even an annual event.
Other magazine highlights include:
  • Short report from the 2014 Invest in ME conference
  • Update on the ambitious "Science to Patients" video project: "The webinars that have been posted so far, have more than 145,000 views.This project has resulted in the establishment of the ME Global Chronicle."
  • The story so far on the Lipkin Microbiome crowdfund appeal: money raised, media buzz and conference action [ok, I wrote this, but it's worth a read anyway :)]
  • ME News from around the world
Thanks to Rob Wibjenga and the Global Chronicle team
 
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Simon

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The ME Global Chronicle has gone bi-monthly due to workload pressures, but the new issue is out (sorry, came out a couple of weeks ago, and I've been slow to post). It's still beautifully produced with lots of highly readable content, including:
  • Science: a look at the role of neuroinflammation in ME/CFS, plus the role of the vagus nerve in inflammation.
  • Updates on Canary in the Coalmine (winning an award from the prestigious Indy Sundance Film Festival), plus all the live crowdfunding appeals from Rituximab to the microbiome
  • New section on Severe ME
  • 2015 March in May: "We need You" update on plans for the US and internationally
  • The Underfinanced ME/CFS Research Field Pt III: What Can We Do
  • plus much much more
Download here, subscribe here
 

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Simon

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April 2015 issue: Imminent launch of Me Action network, Dr Light on subtypes and funding, IoM name debate

Latest issue download link (pdf)

Highlights include:
  • Jen Brea says #MEAction Network launch 'within 2 weeks': page 26: "Because It’s Time We BecameThe Strength Of Our True Numbers."
  • IoM name debate: criticisms from Dr Derek Enlander and Prof Leonard Jason, replies from Dr Lucinda Bateman (page 13)
  • Feature on enterovirus research on page for those interested (page 59)
  • Interview with Prof Alan Light (page 41), including these gems:
We think that actually the genomic and genetic side of this which has been worked on by a number of us now will be giving us a number of answers for first of all how many different forms of this disease there are, and secondly some very strong potential treatments to at least control the symptoms.

...Q: But that’s a new development then?
A: Very new. In the past there were so many grants being funded in many areas and chronic fatigue syndrome was receiving no funding at all. This past year there were at least three major groups that got a substantial amount of money which is something that just hadn’t happened. And I tell you right now that the top scientist who ran the genomics institute at Stanford is really starting to work on the Chronic Fatigue project There’s a group of scientists that start working on this project big time and bringing lots of money into this and there’s at least two independently funded studies from major donors. They are spending now hundreds of millions of dollars. Which has just not been done in the past.
 
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