• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME Global Chronicle: impressive new newsletter

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
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
 
Last edited:

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
upload_2014-9-19_17-51-19.png

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
 

Attachments

  • upload_2014-9-19_17-50-48.png
    upload_2014-9-19_17-50-48.png
    611.4 KB · Views: 14

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
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.
 
Last edited:

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Related discussions:

June 2015 issue of ME Global Chronicle is out (June 2015)
https://forums.phoenixrising.me/threads/june-2015-issue-of-me-global-chronicle-is-out.38176/

ME Global Chronicle: Aug 22 2015 issue out now (Aug. 2015)
https://forums.phoenixrising.me/threads/me-global-chronicle-aug-22-2015-issue-out-now.39431/

The Free ME Global Chronicle - February Edition Available Now (92 pages) (Feb. 2016)
https://forums.phoenixrising.me/thr...ebruary-edition-available-now-92-pages.43240/

Latest free "ME Global Chronicle" newsletter (#19) (Oct. 2016)
https://forums.phoenixrising.me/threads/latest-free-me-global-chronicle-newsletter-19.47584/

Massive ME Global Chronicle Available (2018)
https://forums.phoenixrising.me/threads/massive-me-global-chronicle-available.58444/
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
New!

ME GLOBAL CHRONICLE 39 – DECEMBER 2021
https://mecentraal.wordpress.com/2021/12/17/🌍-table-of-contents/

After a year's enforced break, the ME Global Chronicle of December 2021 has been published today.
The key to all articles included is the link to the Table of Contents https://mecentraal.wordpress.com/.../%f0%9f%8c%8d-table.../
This issue includes the following topics:
* severe ME
* grassroot news & blogs
* petitions
* science
* authorities
* (digital) events
* and news from 22 countries
concluding with a beautiful poem.
1f30d.png
We’d like to express our gratitude to the more than 65 patients and organizations who contributed to such a large variety of impressive articles.
We also thank Dutch info-channel ME Centraal for hosting the magazine from now on, and the many patient advocates who for one reason or another had to step down after fighting for the rights of all of us for decades. With a clear paradigma-shift as a result.
1f384.png
We wish all of you a peaceful Christmas and a much more prosperous 2022
1f31f.png

The editors