SMCI Monthly Update Thread - Feb 2018

Hello from the Solve ME/CFS Initiative. We want to share our latest news and research with you, but we also want to respect your space and not spam the forums. In order to do that, we are starting a monthly thread where will we add all of the latest news from SMCI. Throughout the month we plan to use this thread to post our latest news and research.

We'd like to start by sharing last month's edition of our newsletter Research 1st.

 

ICYMI, SMCI partnered with the widely-circled women’s magazine “Ms.” and connected them with renowned author Julie Rehmeyer to produce an impactful piece on ME/CFS. The story “Pain and Prejudice” focuses on the struggle that women face in receiving a diagnosis for this devastating disease.

Find out more at: www.solvecfs.org/smci-and-mecfs-featured-in-ms-magazine

 

Great Emily, looking forward to updates!

 

Welcome, @Emily Taylor! Solve do great work and I'm very happy to see you here to keep us in touch.

 

Always good to see another jab at PACE! Thanks.

 

Welcome to S4ME @Emily Taylor !!

 

As a follow to their well-received piece on ME/CFS, Ms. Magazine did a lovely profile on SMCI President Carol Head chronicling what fuels her passion:

http://msmagazine.com/blog/2018/02/14/fight-follows-pain-prejudice/

 

That's a very good article about Carol Head. I can see why they particularly use the feminist angle, being a women's magazine. The comparison of funding with GWI is a good one to make in that context, though I suspect the funding difference is more to do with military funding for GWI than directly to do with gender of sufferers.

 

The Solve ME/CFS Initiative (SMCI) National ME/CFS Patient Registry, developed in partnership with the Genetic Alliance and Platform for Engaging Everyone Responsibly (PEER), is preparing for launch in the first half of 2018. As part of the roll-out, we will be publishing a series of articles in R1st with information about the features and benefits of the new platform. The series will start with a look at the Registry Community Guides.

READ MORE

 

SMCI supports worthy ME/CFS research projects across a range of disciplines. In 2017, we funded five research projects and their work is currently underway.

The 2017 Ramsay study from Drs. Jonas Blomberg, Jonas Bergquist, Carl-Gerhard Gottfries, and Olof Zachrisson of Uppsala University and the Gottfries Clinic in Sweden is entitled “Biomarkers for initiation (infection) and metabolic derangement in ME/CFS.” READ MORE