Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.
We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon. “The study will help patients and should move the field forward in
#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL
#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of Health and Human Services (HHS). We continue to fight for our government to do more to meet the needs of people with ME, and to ensure that the evolving Long COVID federal response includes ME/CFS. Read
We have a very exciting opportunity to come together and watch the award-winning documentary Not Going Quietly. We also have an amazing live panel set up to discuss it with us immediately afterwards. Terri Wilder will be moderating and she shares her enthusiasm with us in this short video: Get Your Tickets Here We can
We are excited to announce that submissions are now open to join our next virtual choir! We have so enjoyed sharing your lovely voices with the world, so we had to bring it back for this year’s #MillionsMissing MAY. This year, the song we will be singing is True Colors as performed by Anna Kendrick
Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of ME to dive into and explore more in-depth once a month. Our goal is to keep it understandable while still providing a great overview and links to even more detailed information. The facet of ME that