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Aaaah! My apologies for the misunderstanding. You are right - I was talking about the app. My mom and I were not beta testers on the impact tool, but we were beta testing the mobile app. We actually have a new version to review this week! If all goes well, we should be on-target for the full...

Oh! Almost forgot - Here's a follow-up announcement from the research team: You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app. So, what is a Registry anyway and...

Thanks so much for sharing that feedback! I'll pass it along to the research team and report back. There's also an "add detail" function that I think is not yet available on the beta version? Did you see that on your version? My understanding is that for every day you report using the basic...

Merged thread You + M.E. (International ME/CFS Registry) Website Live! Registries are foundational in understanding, treating, and curing diseases. This approach is desperately needed in ME/CFS. That’s why we’re proud to have created one for ME/CFS that will be accessible to all. With the...

POSTDOCTORAL FELLOW NEEDED NEUROIMAGING PROJECTS DECEMBER 9, 2019 / KARMAN KREGLOE / UNCATEGORIZED https://solvecfs.org/postdoctoral-fellow-wanted-for-dr-jarred-younger-neuroimaging-projects/ Human Neuroimaging Postdoctoral Fellow Neuroinflammation, Pain and Fatigue Laboratory University of...

Thanks to the generosity of an anonymous donor whose spouse suffers from ME/CFS, we have a new matching challenge that will work in combination with our triple challenge. If we receive 1,500 gifts from 1,500 people in any amount by December 31, we will receive $100,000 for our year-end...

Thank you for sharing! If anyone would like to be featured in a future "Patient Voices" segment, please email me at ETaylor@solvecfs.org

[Apologies for the delay everyone - here's the updates from last week. We now know that the budget decisions will be delayed until December 20th] Reporting Back from Capitol Hill Solve M.E. Board member Carol Head and I (Emily Taylor) just returned from Washington D.C., where we tackled...

((Sorry I was slow on posting this - been traveling to DC this past week. SUPER successful visits. More updates coming soon!)) Save the Date: The 4th Annual ME/CFS Advocacy Day on April 21, 2020 The 4th Annual ME/CFS Advocacy Week will take place from Sunday April 19, 2020 to Saturday April...

Thanks for sharing, @MyalgicE - Always looking for ways to improve our process!

Moderator's note: Merged thread Solve ME/CFS Initiative operates many programs and efforts regarding advocacy, education, and engagement and the new Community Advisory Council will create a formal mechanism for stakeholder input. On May 31, 2019, Carol Head transitioned to a member of...

Merged thread Apologies this update is about 10 days old. It's been a super busy week. Hold Please: A Federal Funding Update for ME/CFS What you Need to Know: Final funding decisions have been postponed until November 21. House & Senate proposals contain 2 wins and 2 draws. If the combined...

Hi Wigglethemouse, The Congressional Directed Medical Research Program is the larger umbrella program within the Defense funding program and the "Peer-Reviewed Medical Research Program" is one program among many that is housed inside of it. You can learn more about the program here...

Merged thread $1 million Grant Awarded for Australian Biobank and Registry Solve M.E. is delighted to congratulate our partners at Emerge Australia and La Trobe University for their $1 million grant from philanthropic trust the Mason Foundation to establish the first Australian ME/CFS Biobank...

Just posted!

Bump! Don't forget to register - webinar is in 3 days!

https://www.access-board.gov/ The U.S. Access Board is a federal agency that promotes equality for people with disabilities through leadership in accessible design and the development of accessibility guidelines and standards for the built environment, transportation, communication, medical...

Thank you @DokaGirl - we're all in this together!

Did we win yet? A Federal Funding Update for ME/CFS What you Need to Know: The House approved a budget with $5.4m for ME/CFS, the first time in recent memory the program was funded by the House and not eliminated The funding increase requested by ME/CFS Advocacy Day was not included. Yet...

July 2019 Solve ME Webinar: Disability Insurance for ME/CFS Disability Insurance Attorney Andrew Kantor from Kantor & Kantor, LLP joins us to explain the ins and outs of filing for disability under an ERISA (employer-sponsored) Policy when disabled from ME/CFS. Register for the webinar here...