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Watch Now! The Congressional Roundtable on Women’s Chronic Illness During a Pandemic

Watch now! The Congressional Roundtable on Women’s Chronic Illness During a Pandemic

Last week, as part of our collaboration with the Congressional Bipartisan Women’s Caucus, Miles for Migraine, and the Headache and Migraine Policy Forum, Solve M.E. hosted a virtual congressional briefing on COVID-19, ME/CFS, and Migraine Disease.

Moderated by two-time Emmy nominated TV host, Jedediah Bila, “Women’s Chronic Illness During a Pandemic” was designed to educate members of congress and their staff about COVID-19’s impacts on women’s clinical care and economic burdens through the experiences of women with ME/CFS and Migraine Disease. Featured panelists included Caucus Vice-Chair Representative Madeline Dean, Dr. Nancy Klimas, Jamie Sanders, Dawn Buse (PhD), Ashanti Daniel (BSN, RN), and Joanna Kempner (PhD).

As emerging evidence indicates lasting health complications in COVID-19, how is the ongoing pandemic going to impact women with chronic illness? Through the lens of ME/CFS and Migraine Disease, this virtual roundtable explores the increasing economic burden, lagging clinical care, and potential scientific opportunity of women’s chronic illness during the current crisis.

Watch the virtual congressional briefing here.

Solve M.E. in the News: Oved Amitay and Emily Taylor Weigh in On the Long-Term Impact of COVID-19

Solve M.E. Chief Executive Officer Oved Amitay and Director of Advocacy and Community Relations recently spoke to Yahoo News Australia about the trend of young COVID-19 survivors presenting with symptoms of ME/CFS.

Amitay told Yahoo News, “With the coronavirus long-haulers, if there’s any silver lining to this situation it’s the possibility that out of COVID-19 we’ll get a better understanding of ME/CFS, with the potential benefit for both communities.”

Read the article in its entirety here.

Watch now! The First Meeting of the Interagency ME/CFS Working Group

Solve M.E. Chief Scientific Officer Sadie Whittaker

Led by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), U.S. agencies have come together to coordinate their efforts to further research, treatment, and prevention of ME/CFS and to facilitate stakeholder input and community participation with the creation of the new Interagency ME/CFS Working Group.

This week, Solve M.E. participated in the first meeting of the Interagency ME/CFS Working Group, represented by Chief Executive Officer Oved Amitay and Chief Scientific Officer Dr. Sadie Whittaker. The meeting was live streamed and you can watch a recording of it here.

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Solve M.E. Supports Expanded Paid Leave and the HEROES Act

Expanding paid leave for caregivers during the COVID-19 pandemic and beyond has been a top priority for Solve M.E. The U.S. House of Representatives has taken an important first step toward expanding paid leave through the passage of the HEROES Act. Now, it is time for both chambers to come together to act in our best interest.

Solve M.E. is one of 157 organizations to sign a letter to Congress urging representatives to expand eligibility for the paid family and medical leave program to include individuals at high risk for adverse complications from COVID-19 and working members of their households. This policy will allow those at highest risk to remain home for the duration of the COVID-19 pandemic and will help ensure their health and safety.  Read our letter to Congress here.

Solve M.E. Joins Forces with the Protecting the Immunocompromised Coalition

As Congress continues deliberating additional legislation to respond to the novel Coronavirus (COVID-19) pandemic, Solve M.E. has joined a coalition led by the Immune Deficiency Foundation to ensure the needs of immunocompromised Americans, including the ME/CFS community, are adequately addressed.

We’ve signed onto a letter requesting that Congress task the Centers for Disease Control and Prevention (CDC) to work with the immunocompromised stakeholder community and related health experts to develop and regularly update recommendations aimed at addressing the needs of the immunocompromised.

These recommendations would include recognizing the needs of this population and ensuring immunocompromised individuals are provided protections and accommodations to meet these needs. These recommendations and resulting state and federal policies should include flexibility to ensure that individuals are treated fairly and without discriminatory consequences.  Read the letter to Congress here.

 

Beating back bad science and changing the legislative landscape to make ME/CFS widely understood, diagnosable, and treatable has been a great community effort and we’re proud and thankful to be a part of the team. Join the community effort and donate to the Solve ME/CFS Initiative today!

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