SMCI Monthly Update Thread - March 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.

 

2016 Ramsay: Research Team 1 Update

Dr. Jarred Younger (University of Alabama at Birmingham) recently provided Solve ME/CFS Initiative (SMCI) with a progress update on the Ramsay 2016 Research Team 1 project. He reflected on what motivated him to study neuroinflammation in ME/CFS and how pilot grants like the Ramsay Award can jump start promising lines of investigation. READ MORE

 

Link seems to be broken.

 

It works now.

Yeah, I know, "potentially" and "suggests", but I'll take any smidgen of hope I can get.

 

Members of Congress are coming together in a single voice to stand for ME/CFS. Will your Representative join them?

This week, SMCI staff and Board of Directors traveled to Washington DC and got results!

Congresswomen Ana Eshoo and Zoe Lofgren are leading other members of congress in a letter and appropriations request for ME/CFS. Read the full letter and committee report language here. In brief, the proposed effort:

(1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

(2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

(3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

(4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.

This action is a joint effort between #MEAction and the Solve ME/CFS Initiative.

Use our easy form to send a message to your member of congress and ask them to join the effort today – *deadline is March 14*

 

Was your post cut short @Emily Taylor ?

 

Register now for ME/CFS Advocacy Day on Capitol Hill!

ME/CFS Advocacy Day on Capitol Hill brings people with ME/CFS, their loved ones, advocates, scientists, clinicians and caregivers from across the country to meet other advocates, share their unique stories with members of congress, and call for action and research funding, together in one voice.

Check out the May ME/CFS Advocacy Week page for more information.

To register for ME/CFS Advocacy Day on Tuesday May 15, visit the registration page.

SMCI will provide:

• All needed materials for meetings with Congress
• Advocacy Training
• Scheduling of meetings with YOUR representative and/or senators
• A special rest area on Capitol Hill to make the experience as easy as possible, and to spend down time / rest time with other advocates.

You’ll be responsible for your hotel and travel to the event. SMCI is securing hotel blocks that will be available from May 12-16.

Advance Registration is required for Tuesday, May 15th, so that we have time to set up meetings with your congressional representatives.

To learn more or to register for the event visit our registration page.

 

SMCI's Research Advisory Board member, Dr. Maureen Hanson, publishes new study
Research Highlight: Eukaryotes in the gut microbiota in myalgic encephalomyelitis/chronic fatigue syndrome

• Researchers did not find significant alteration of gut eukaryotes – fungi and protozoa – in ME/CFS patients
• They do note a non-significant (meaning the possibility of chance cannot be ruled out) decrease in diversity of gut eukaryotes – in ME/CFS as compared to healthy controls
• They also found indications of a pro-inflammatory environment in the guts of patients, building on previous research findings
• Work to characterize eukaryotes in ME/CFS is a less explored area of the gut microbiome; future studies might contribute to better understanding of how the complex interactions between the community of microorganisms in our guts factor into ME/CFS

READ MORE

 

Just a quick update for ME/CFS Advocacy Day on Capitol Hill:

I’m happy to share that the room block is now available. You can book online at: https://book.passkey.com/go/SolveMECFS

Or, if booking by phone use code “SolveMECFS” for reduced rates, free breakfast and free wifi.

More details are now available on the event webpage at: https://solvecfs.org/2nd-annual-cfs-advocacy-week/

If you have any questions, please email me at etaylor@solvecfs.org

Thanks!

 

This looks great and I appreciate all the work being put into planning ME/CFS Advocacy Day!

I won't be able to travel to Washington, DC. But I'm looking forward to participating in other forms of activism on May 12th.

 

Hi @Emily Taylor, I just noticed via Twitter the March 2018 update to the page on Ramsay Awards 2017 Team 3 and a Q & A with PhD candidate Fiona Newberry (thank you all at SMCI and no need to reply, just posting the link here for ref.) "Through this Ramsay study, Team 3 aims to get us closer to an answer for the complicated question they posed in a recent article in Clinical Science: Does the microbiome and virome contribute to ME/CFS?" https://solvecfs.org/smci-ramsay-awards-2017-meet-research-team-3/