On the Solve ME website there's a message from new president and CEO, Kristin Jacobson: https://solvecfs.org/solves-new-ceo-addresses-community/
The Fall 2023 edition of The Chronicle from Solve M.E. is now available. Get the PDF version here: https://solvecfs.org/wp-content/uploads/2023/10/Chronicle_Fall23_Final.pdf Use this link if you want a copy of the next print edition delivered free of charge by mail to your home or business: https://solvecfs.org/news-and-insights/subscribe-to-newsletter/
Webinar from Solve M.E.: The Patient-Doctor Partnership: Optimally Treating People with Long Covid and ME/CFS Across the US Thursday, December 7, 12:00 pm - 1:00 pm Pacific Time https://solvecfs.org/event/the-pati...ple-with-long-covid-and-me-cfs-across-the-us/ Find the time in your time zone here: https://www.timeanddate.com/worldcl...octor+Partnership&iso=20231207T12&p1=137&ah=1 Registration link: https://us02web.zoom.us/webinar/register/WN_LDNj6Q7bT9uj38YPfSrUpw#/registration
I just listened to this webinar and was impressed by the doctors. What did people think? I looked at the UCLA website myself and was worried about the outdated info about diagnosis and treatment.
December Advocacy Cafe "A Virtual Hour of Discussion, Recap and Connection" December 29 at 12 noon Pacific / 3 PM Eastern https://solvecfs.org/event/december-advocacy-cafe/ Find the time in your time zone here: https://www.timeanddate.com/worldcl...ber+Advocacy+Cafe&iso=20231229T12&p1=137&ah=1
Solve M.E. Webinar: Changes in the Gut Microbiome in ME/CFS and Long Covid Monday, Jan. 22 1 PM Pacific / 4 PM Eastern https://solvecfs.org/event/changes-in-the-gut-microbiome-in-me-cfs-and-long-covid/ Find the time in your time zone here: https://www.timeanddate.com/worldclock/fixedtime.html?msg=Changes+in+the+Gut+Microbiome+in+ME/CFS+and+Long+Covid&iso=20240122T13&p1=224&ah=1
Solve: A #GlobalVoiceForME on World ME Day 2024 https://solvecfs.org/solve-a-globalvoiceforme-on-world-me-day-2024/
A recording from the Solve M.E. February 28 webinar "Hydrogen Water Testing for ME/CFS: A New Clinical Trial" is now available. About an hour long (I have not watched it). https://www.youtube.com/watch?v=N62IEp5btMI
Solve ME has announced four training sessions for Advocacy Week 2024 Note: Registration for Advocacy Week closes March 15th Registration deadline extended to midnight on Monday, March 18! Registration is required for congressional meetings held during Advocacy Week but not for individual training sessions. What is Advocacy Week? Training sessions are scheduled for Mondays at 4 PM Pacific / 7 PM Eastern March 18: Training 1 – How to tell your story March 25: Training 2 – What to expect in your meetings April 1: Training 3 – What we are advocating for April 8: Training 4 – How to use the Advocacy Associates App Announcement here: https://solvecfs.org/event/advocacy-week-2024-training-session-1-how-to-tell-your-story/ Zoom link for training sessions: https://us02web.zoom.us/j/88455730827#success
Note: This event is listed on the Solve ME event calendar with the wrong date! (It shows April 2 which has already passed) But the registration link has the correct date, April 24. Webinar: Comparing immunological signatures between Long Covid and ME/CFS April 24 at 12:30 pm Pacific / 3:30 pm Eastern Registration link: https://us02web.zoom.us/webinar/register/WN_GY4b1ezER7udraoDjGTD8g#/registration Spoiler: Webinar announcement image The link below is to the Solve ME event calendar. There is a typo so it mistakenly says this event has passed. But the rest of the information is correct. https://solvecfs.org/event/webinar-comparing-immunological-signatures-between-long-covid-and-me-cfs/ EDIT: Find the time in your time zone here: https://www.timeanddate.com/worldcl...ovid+and+ME/CFS&iso=20240424T1230&p1=224&ah=1
Email from Solve ME: Solve M.E. Announces Emily Taylor as New President and CEO and Publication of New White Paper More info about the white paper: Link to Solve ME article about the white paper: https://solvecfs.org/solve-releases...ronic-conditions-and-illnesses-iaccis-at-nih/
Not sure if this fits into the thread but Janet Dafoe sent some harsh tweets about solve ME a couple days ago. https://twitter.com/user/status/1778889127351714303 https://twitter.com/user/status/1778886090696360010
I have no idea what Janet Dafoe is talking about in her tweets to Solve ME/CFS saying that ME/CFS isn't mentioned. ME/CFS is mentioned. It's not just about Long COVID. The letter to email Members of Congress says: https://p2a.co/tE8DZk8 This link in the Solve ME/CFS tweet goes to their White Paper that says: https://solvecfs.org/solve-releases...ronic-conditions-and-illnesses-iaccis-at-nih/
Yes Janet did exaggerate a lot. I think there is still some fair criticism though which is that not all cases of ME are post infectious and this classification definitely neglects those that aren’t. And more generally, for an association called “solve ME” they spend an awful lot of resources and time focusing on related illnesses (Long covid, lyme, POTS and the like) and in that sense their name may be a little misleading/inaccurate. Obviously they have and are doing an awful lot of amazing work too, any criticism that fits into a tweet will likely fail to capture anywhere near the complexity of the situation.
My concern is that people who would otherwise participate in advocacy and email their Members of Congress may now not do so because of the misinformation that Janet Dafoe is spreading. Has anyone called her out on Twitter?
I didn’t see anyone calling her out. Just some long covid people agreeing with her because they believe that ME and LC are completely different (the viral persistance ideologes).
Webinar from Solve M.E. - Covid Vaccinations: Efficacy, Options, and Special Considerations for Chronic Illness Tuesday, July 2 1 PM Pacific / 4 PM Eastern https://solvecfs.org/event/covid-va...d-special-considerations-for-chronic-illness/ Register here: https://us02web.zoom.us/webinar/register/WN_-vcECdI4QImGHEJpSJOo-Q (registration link allows you to select your time zone)
I'm a bit late to this, but the Solve paper is about getting a home for infection-associated chronic conditions. Of course Long covid should be focussed on - it is new and is having big impact. It's a reason for change. To a lesser extent, Lyme disease is spreading over the US - again, that's news, and people are and should be scared long Lyme will happen to them. I don't agree with everything Solve does, but to not acknowledge the fact that politics is the game that is being played and support Solve in playing it seems short-sighted.
From the Solve ME mailing list: "The Summer 2024 Edition of The Chronicle is Available Online Now! We're excited to share the newest edition of our flagship research and advocacy journal, The Chronicle!" Inside you'll find: Our Visit to Yale to Honor Immunologist Dr. Akiko Iwasaki Solve's 2024 Appropriations Asks Highlights from Advocacy Week Updates on Solve-Funded Research Our Key Takeaways From the NIH Intramural ME/CFS Clinical Study Solve Together Enrollment for Pioneering Clinical Studies How to Make a Difference with DIY Fundraising Study Using Solve Real-World Data Examines Joint Hypermobility Reflections from Solve President & CEO Emily Taylor And more!" https://solvecfs.org/wp-content/uploads/2024/06/SolveChronicleSummer2024.pdf
