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X-WR-CALDESC:Events for Solve ME/CFS Initiative
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DTSTART;VALUE=DATE:20230403
DTEND;VALUE=DATE:20230418
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UID:37812-1680480000-1681775999@solvecfs.org
SUMMARY:Solve M.E. Advocacy Week Training Sessions
DESCRIPTION:No advocacy experience? Join our training sessions!\n\n\n \n\n\nWe’re hosting three virtual training sessions — all will cover the same material\, to allow multiple opportunities to register. Join our virtual Congressional Meeting Trainings on Monday\, April 3rd\, Thursday\, April 6th\, and Tuesday\, April 11\, 2023. We will also have an In-Person Congressional Meeting Training on April 17th\, 2023\, in Washington DC. \n\n\n \n\n\nRegister for training here.
URL:https://solvecfs.org/event/solve-m-e-advocacy-week-training-sessions/
LOCATION:Online
CATEGORIES:Advocacy,Advocacy Week 2023
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/02/ADVOCACY-MONTH-ACTION-CENTER.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230417
DTEND;VALUE=DATE:20230423
DTSTAMP:20230207T162649Z
CREATED:20230207T011136Z
LAST-MODIFIED:20230207T162649Z
UID:37652-1681689600-1682207999@solvecfs.org
SUMMARY:Advocacy Week 2023
DESCRIPTION:Advocacy Week 2023 will take place virtually and in person throughout the week of April 17th to April 22nd\, 2023!  \nAdvocacy Week is a nationwide advocacy effort to connect people with ME/CFS\, Long COVID\, and associated conditions; scientists; clinicians\, and caregivers to share their unique stories with Congress. Our ultimate goal is to make ME/CFS\, Long COVID\, and associated conditions widely understood\, diagnosable\, and treatable. \nThere are actions for every energy level and ability to join\, from social media posts to virtual meetings with Congressional leaders. This year we will be offering both virtual and in-person (Washington DC) events.  \n\n\n\n\nAdvocacy Week 2023  \nMonday\, April 17th\, 2023 – Training Day – Washington DC & Virtual \nTuesday\, April 18th\, 2023 – Senate Advocacy Day – Washington DC \nWednesday\, April 19th\, 2023 – Social Media Action Day – Virtual \nThursday\, April 20th\, 2023 – House Advocacy Day – Virtual \nFriday\, April 21st\, 2023 – EmPOWER ME Day – Virtual \nFor registration and more event details\, visit StopTheLongHaul.org.
URL:https://solvecfs.org/event/advocacy-week-2023/
CATEGORIES:Advocacy,Advocacy Week 2023,Solve M.E. Leadership
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/02/Advo-Week-2023-Announcement-Graphic.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230421T100000
DTEND;TZID=America/New_York:20230421T110000
DTSTAMP:20230330T201248Z
CREATED:20230330T173436Z
LAST-MODIFIED:20230330T201248Z
UID:38107-1682071200-1682074800@solvecfs.org
SUMMARY:EmPOWER M.E. 2023: Navigating the World with Energy Limiting Disabilities
DESCRIPTION:Hosting EmPOWER M.E. during Advocacy Week each year is one of our favorite ways to connect with our community after a long week of congressional meetings.  \nThis year\, our Lived Experience Taskforce (LET) partners helped us choose our topic: Navigating the World with Energy Limiting Disabilities. This special event on April 21 at 10 AM ET will feature expert ME/CFS and Long Covid advocates sharing tips for overcoming personal\, professional\, and medical challenges. \nDuring our EmPOWER M.E. roundtables\, we convene panels of patient advocates\, professionals\, and scientists to share their expertise on topics relevant to the quality of life for people with ME/CFS\, Long Covid\, and their caregivers. Learn more and watch past events here. \nRegister here.
URL:https://solvecfs.org/event/38107/
LOCATION:Online
CATEGORIES:Advocacy,Advocacy Week 2023
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/03/Empower-ME-2023.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230425T100000
DTEND;TZID=America/New_York:20230425T160000
DTSTAMP:20230301T234226Z
CREATED:20230301T234226Z
LAST-MODIFIED:20230301T234226Z
UID:37888-1682416800-1682438400@solvecfs.org
SUMMARY:FDA Patient-Focused Drug Development Public Meeting for Long Covid
DESCRIPTION:The US Food and Drug Administration (FDA) is hosting a virtual public meeting on Patient-Focused Drug Development for Long Covid on Tuesday\, April 25th\, 2023\, from 10 a.m. to 4:00 p.m. ET.  It will be conducted with live translation in both English and Spanish. \nPatient-Focused Drug Development meetings are important and infrequent opportunities for patients to provide direct input to the FDA\, as well as for the FDA to obtain patient and patient representative input on several aspects related to a disease. ME/CFS was one of the earliest diseases to benefit from the concept of including patients in this process\, approximately a decade ago. \nThis meeting will focus on Long Covid\, how it affects daily life\, symptoms that matter most to patients\, current approaches to treating Long Covid\, and considerations for clinical trial participation. \nSolve M.E. encourages individuals in our community with Long Covid\, family members\, advocates\, caregivers\, and other stakeholders to participate in the live webcast. Register here and find more information on the discussion questions and meeting format\, and find more information on FDA’s website. \nPatients or caregivers who are willing to share their experiences as part of a panel conversation are asked to indicate their willingness as part of registration. They will then be directed to send a short summary of their responses to the discussion questions to PatientFocused@fda.hhs.gov.
URL:https://solvecfs.org/event/fda-patient-focused-drug-development-public-meeting-for-long-covid/
LOCATION:Online
CATEGORIES:Long Covid,Research
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/03/Untitled-design-4.png
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20230427T110000
DTEND;TZID=America/Los_Angeles:20230427T120000
DTSTAMP:20230405T222038Z
CREATED:20230405T221942Z
LAST-MODIFIED:20230405T222038Z
UID:38161-1682593200-1682596800@solvecfs.org
SUMMARY:Effects of Long Covid and ME/CFS on Sleep
DESCRIPTION:Many individuals who have had COVID-19 experience long-term symptoms that have a major impact on their lives. One of the most common symptoms is sleep disturbance. After more than six months from the time of infection\, about 60% of people self-report lingering sleep difficulties\, even if they had a mild course of acute COVID-19. Unrefreshing sleep is also part of the diagnostic criteria for ME/CFS\, along with other overlapping symptoms such as post-exertional malaise (PEM) or “brain fog.” \nTo probe deeper into the topic of sleep\, we are pleased to invite you to a webinar on the Effects of Long Covid and ME/CFS on Sleep\, featuring  SleepScore Lab’s neuroscientist\, Dr. Elie Gottlieb. The presentation will cover a range of topics including: \n\nThe connection between Long Covid\, ME/CFS\, and sleep disturbances.\nThe neurological and cognitive aspects of sleep and how brain changes/disruptions may be bi-directionally associated with Long Covid and ME/CFS.\nUnrefreshing sleep vs. quality sleep and why people with ME/CFS or Long COVID might experience the former.\nThe evidence-based methods to improve sleep and how SleepScore Lab’s improvement program addresses them.\n\n The presentation will be followed by a live Q&A. \nRegister here.
URL:https://solvecfs.org/event/effects-of-long-covid-and-me-cfs-on-sleep/
LOCATION:Online
CATEGORIES:Long Covid,Research,Webinar
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/04/April-27-Sleepscore-webinar.png
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