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X-WR-CALNAME:Solve ME/CFS Initiative
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X-WR-CALDESC:Events for Solve ME/CFS Initiative
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UID:40914-1733306400-1733310000@solvecfs.org
SUMMARY:Severe ME/CFS: Care\, Rights\, and Research Webinar Series -- Medical Care (Pt. 3 of 4)
DESCRIPTION:ME/CFS has a broad spectrum of severity\, with some able to work while others require total care and support. People living with Severe ME are often confined to their beds and require assistance with basic daily activities such as eating or bathing. Their symptoms can be exacerbated by light\, sound\, and movement\, and some may require round-the-clock care. These severe symptoms can limit access to medical care and support\, leading to isolation from family and friends. About 25% of people with ME/CFS are severely ill and bedbound as a result of their illness. For many\, there is a pattern of relapse and remission. \nThis four-part webinar series presented by Solve M.E. and the Bateman Horne Center will feature medical professionals\, legal experts\, scientists\, and care partners discussing tips for caregiving\, legal perspectives on individual rights\, strategies for addressing treatment challenges for medical providers\, and the latest research breakthroughs impacting people with Severe ME. \nWhile this series is focused on Severe ME\, the information shared will be relevant to other severe chronic illnesses\, as well as people with moderate to mild ME/CFS\, Long Covid\, and other infection-associated chronic conditions and illnesses (IACCIs). \nEach webinar takes place from 10-11 am PT (11 am – 12 pm MT). \nTopics and dates are:\n• October 9: Caregiving\n• November 13: Legal rights\n• December 4: Medical care\n• January 15: Research \nRegister for one or more of the events in the series here:\nhttps://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw \nThe content provided by Solve M.E. and the Bateman Horne Center in this webinar is for informational purposes only and does not constitute legal or medical advice. Viewers are encouraged to consult with qualified legal or medical professionals for specific advice tailored to their individual circumstances.
URL:https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-medical-care-pt-3-of-4/
CATEGORIES:Advocacy,Research,Webinar
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2024/08/SolveBHCWebinarSeriesDatesIG.png
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CREATED:20241111T193438Z
LAST-MODIFIED:20241203T172519Z
UID:41153-1734516000-1734519600@solvecfs.org
SUMMARY:The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished work of the COPVS Task Force
DESCRIPTION:**NEW TIME AND DATE!** \nIn 2021 the National Institutes of Health (NIH) launched the RECOVER Initiative\, a patient-centered\, integrated\, adaptive research network created to study Long Covid. Included in the RECOVER Initiative infrastructure was the Commonalities with Other Post-Viral Syndromes Task Force. \nThe Task Force included Solve President and CEO Emily Taylor\, Dr. Leonard Jason (Professor of Psychology at DePaul University and the Director of the Center for Community Research)\, and other well-known ME/CFS experts and played a crucial role in fostering collaboration among researchers\, clinicians\, and patient advocates. It also facilitated the exchange of knowledge and identified common data elements\, treatment strategies\, and diagnostic criteria. This multidisciplinary approach was essential for advancing our understanding of post-viral illnesses and developing effective interventions. \nThe Task Force concluded that Long Covid researchers can learn from ME/CFS efforts to identify key symptoms\, provide explicit criteria for when a symptom meets the threshold for being considered a problem\, and employ tactics to ensure that consistent information is elicited from patient interviews across settings. \nThe Task Force published a paper on their findings in December 2023 and was then disbanded by NIH. However\, there is clearly still a need to educate care providers\, researchers\, and the public about the connection between ME/CFS and Long Covid. \nIn this webinar\, Emily Taylor and Dr. Jason will discuss their findings and what they signal for the future of research on ME/CFS\, Long Covid\, and other infection-associated chronic conditions and illnesses (IACCIs). The session will conclude with the launch of an important advocacy action.
URL:https://solvecfs.org/event/the-future-of-iacci-and-long-covid-research-me-cfs-and-the-unfinished-work-of-the-copvs-task-force/
CATEGORIES:Advocacy,Long Covid,Research,Solve M.E. Leadership,Webinar
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2024/11/500LennyJasonCOPVSIG121824.png
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