A recording from the July 2 Solve M.E. webinar "Covid Vaccinations: Efficacy, Options, and Special Considerations for Chronic Illness" is now available: https://www.youtube.com/watch?v=xqTA4RPrj38
Update from Solve ME about one of their Ramsay Research Grants: A Root Cause for ME/CFS, Long Covid, and Post-Vaccine COVID-19 Syndrome: Damaged Pituitary Glands https://solvecfs.org/a-root-cause-f...e-covid-19-syndrome-damaged-pituitary-glands/ The study is discussed in this forum thread: https://www.s4me.info/threads/hypoc...-me-2024-ruiz-pablos-et-al.39101/#post-541947
Watch! Solve Ramsay Research Grant winner Rob Wüst, PhD presents "Skeletal Muscle Fatigue & Post-Exertional Malaise (PEM) in People with Long Covid & Implications for ME/CFS." Dr. Wüst received a Solve M.E. Ramsay Research Grant in 2022 to study muscle pain, PEM, and treatments for pain and malaise in patients with diseases like Long Covid and ME/CFS. He found that, at the physiological and molecular levels, PEM differs from general fatigue. These differences have big implications for how physical exercise affects patients with Long Covid or ME/CFS. In this webinar, Dr. Wüst updates us on his studies of these two central symptoms of Long Covid and ME/CFS (PEM and general fatigue), and answers questions from attendees. Watch here: https://ow.ly/fXYf50TCPwQ ***** Thread related to the research here: Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al
Just posted on Facebook www.facebook.com/story.php?story_fbid=953500123487285&id=100064819177796 about asking people to ask NIH to support their me/cfs research map to advance research
(posting info on this thread since the link goes to Solve ME website) Free webinar from Bateman Horne Center and Solve M.E. - Severe ME/CFS: Care, Rights, and Research, 4-Part Webinar Series Legal Rights (Pt. 2 of 4) Wednesday, November 13 10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST https://solvecfs.org/event/severe-m...search-webinar-series-legal-rights-pt-2-of-4/ Find time in your time zone here: https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME/CFS:+Care,+Rights,+and+Research+-+Legal+Rights+(Pt.+2+of+4)&iso=20241113T10&p1=202&ah=1 Register for one or more of the events in the series here: https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw
"Creating a research home for ME/CFS, Long Covid, and others" November 5, 2024 "Despite the significant disease burden, Myalgic encephalomyelitis (ME), previously known as chronic fatigue syndrome (CFS), lacks effective diagnostics and therapeutics. Emily Taylor, President and CEO of Solve M.E., explains why dedicated research for Infection-Associated Chronic Conditions and Illnesses (IACCIs) such as ME/CFS is vitally needed" https://www.openaccessgovernment.or...home-for-me-cfs-long-covid-and-others/184620/
Solve M.E. and Bateman Horne Center are jointly co-hosting a 4 part webinar for the benefit of patients and caregivers navigating life with severe ME/CFS. See https://www.s4me.info/threads/usa-news-from-solve-me.19489/page-9#post-564311 for more details. A recording of the first one - Session 1: Caregiving (about 1 hour long) - is now available on SolveME's youtube channel: https://www.youtube.com/watch?v=V155JBdt3bA
The latest blog post from Solve ME, "a special message from Solve M.E. President and CEO Emily Taylor." Hope Amid Uncertainty https://solvecfs.org/hope-amid-uncertainty/ Here's are the hopeful items that she lists, see blog post for full details. The Edge of Medicine Conference Simmaron Research Study Findings and the Rapamycin Trial Ampligen Clinical Trial Results Indicate Success in Treating Fatigue in People with Long Covid Educating Medical Providers with the Inclusion of ME/CFS and Long Covid in Grand Rounds
Upcoming Solve ME webinar: The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished work of the COPVS Task Force Wednesday, December 18 10 AM Pacific / 1 PM Eastern / 6 PM in Great Britain & Ireland https://solvecfs.org/event/the-futu...-the-unfinished-work-of-the-copvs-task-force/ Find the time in your time zone here: https://www.timeanddate.com/worldclock/fixedtime.html?msg=Solve+ME+Webinar:+The+Future+of+IACCI+and+Long+Covid+Research&iso=20241218T10&p1=137&ah=1
Free webinar from Bateman Horne Center and Solve M.E. - Severe ME/CFS: Care, Rights, and Research, 4-Part Webinar Series Research (Pt. 4 of 4) Wednesday, January 15, 2025 10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST More details here: https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/ Register here: https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw Find time in your time zone here: https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME/CFS:+Care,+Rights,+and+Research+-+Part+4+of+4&iso=20250115T11&p1=220&ah=1
"Solve Sponsors Long Covid Medical Education Event at the University of Rochester" https://solvecfs.org/solve-sponsors...ucation-event-at-the-university-of-rochester/
"Solve Board Member Cynthia Adinig Selected for HHS Long Covid Advisory Committee" https://solvecfs.org/solve-board-me...lected-for-hhs-long-covid-advisory-committee/
Important update: This date for this webinar has been changed to January 21. The dates shown by the website and the registration link have now been changed to the new date. https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/
Recordings for parts two and three of the Severe ME/CFS webinar series are now available on SolveME's youtube channel: Severe ME/CFS Webinar Series Session 2: Legal Planning https://www.youtube.com/watch?v=eMwJbjqh4SI Severe ME/CFS Webinar Series Session 3: Medical Care https://www.youtube.com/watch?v=b8Lk9GA70Bs
From Solve ME: New Clinical Trial Will Test How Baricitinib Improves Neurocognitive Function in Patients with Long Covid Edit: Forum thread on this trial is here - https://www.s4me.info/threads/usa-r...cardiopulmonary-symptoms-lc-reverse-lc.41347/
From Solve ME: New Solve-Funded Study Backs Stellate Ganglion Block for Long Covid, ME/CFS The forum thread for this study is here: https://www.s4me.info/threads/stell...ve-cohort-pilot-study-2024-duricka-liu.42528/
Part four of the Severe ME/CFS webinar series, recorded on January 21, is now available on SolveME's youtube channel. Severe ME/CFS Research: Removing Barriers to Access (session 4) https://www.youtube.com/watch?v=65apr_RsdFM Edited to add two links: Full transcript Powerpoint slide deck
https://solvecfs.org/the-infection-...ci-community-resource-guide-is-now-available/ The Infection-Associated Chronic Conditions Initiative’s (IACCI) Community Resource Guide is Now Available March 4, 2025 6:50 pm In 2023, the Long COVID Alliance (co-founded by Solve M.E.) established a new Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC)using $77,000 in grant funding through the CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program. The Coalition brought together patient advocacy groups, medical experts, and community-based organizations working on infection-associated chronic conditions to discuss common objectives among attending organizations and to identify IACC community needs that would benefit from collaboration across organizations. Together, we’ve engaged with policymakers, supported critical research efforts, and brought much-needed attention to the chronic illness community. The foundation laid by each of these organizations and individuals has enabled the IACC Initiative to take shape and to be positioned for lasting impact. Moving forward, we are committed to continuing this work, expanding research efforts, and ensuring that infection-associated chronic conditions receive the recognition, funding, and comprehensive care they deserve. To that end, we’re pleased to announce that our community-sourced IACC Resource Guide is now available. Read it here. We are so proud to have worked with CDC, LCA partners, and our community to develop the first IACC resource guide. We hope many more soon follow with additional resources for patients! This collective endeavor follows our series of workshops on the needs and priorities of the infection-associated chronic conditions patient community, by the IACCPAC – a part of the IACC Initiative, led by The Long Covid Alliance, Solve M.E., COVID-19 Longhauler Advocacy Project, and Patient-Led Research Collaborative, with support from the CDC Foundation through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE). As the culmination of strategic collaboration between IACC stakeholders, we hope that this resource guide helps to strengthen support for individuals experiencing IACCs. We are so extremely proud of how our community has come together to gather expertise, recommendations, and resources that individuals and families can utilize. The Resource Guide includes disease-specific patient advocacy organizations, as well as information on specialists, pertinent research, and support services. Our guide is a living document, and we encourage you to share your own preferential resources and insights to continue to help members of our community. We also extend our heartfelt thanks to the advocates and experts who dedicated their time and knowledge in order to enrich our guide. For more information about the IACC Initiative, or to learn how you can help address the needs of people living with infection-associated chronic conditions, please email: contact@iaccinitiative.org.
