Will the 21st Century Cures Act Deliver Innovation and Health Breakthroughs for Post-Infection Diseases?

By Emily Taylor, Director of Advocacy and Community Relations Five years ago, the 21st Century Cures Act (Cures Act) was signed into law making national headlines, launching new health initiatives, and spearheading a new chapter in government scientific investment. With robust funding, multiple government agencies rolled out programs designed to accelerate medical product development and […]

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Sign the Petition to Fix the ICD coding of ME/CFS

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are asking that you sign this petition in support of our proposal.  At present, […]

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U.S. ME/CFS Clinician Coalition Releases Updated Clinical Guidance That Could Help Those with Long Covid

The U.S. ME/CFS Clinician Coalition recently released updated clinical guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which may also help individuals suffering from Long Covid symptoms. An article about the guidance was published in Mayo Clinic Proceedings, which is widely read by clinicians. Read it here. The updated clinical guidance from the U.S. ME/CFS Clinician […]

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Solve M.E. and Six Other Organizations Tackle Catastrophic Lack of ME/CFS Case Tracking in the U.S.

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM). Read our press release here. Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign […]

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We’re Taking the CDC’s Draft Review of ME/CFS Diagnosis and Treatment to Congress

In 2018, the Centers for Disease Control (CDC) announced it was soliciting bids to create evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In 2019, the CDC announced a contract with the Pacific Northwest Evidence-Based Practice Center (EPC). The draft of this work, a Draft Systematic Evidence Review, was shared with the public for the […]

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Solve M.E. Advocacy Changing the Face and Funding of Clinical Trials

Lowering the costs and barriers for participation in clinical trials is a key priority for Solve M.E.  For the past three years, Solve M.E. has endorsed and advocated for the passage of H.R. 913, The Clinical Treatment Act. Initially introduced in 2019 by Representatives Ben Ray Lujan (D-NM-03) and Gus Bilirakis (R-FL-12), this new law guarantees coverage […]

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Biden Administration Announces Long Covid Resources & Support

As part of the ceremonies marking the 31st Anniversary of the Americans with Disabilities Act, the Biden administration this week formally released a package of guidance and resources to support people with Long Covid. The White House fact sheet noted, “The announcements from the Departments of Health and Human Services (HHS), Justice, Education, and Labor […]

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Long COVID Alliance in TIME and The New York Times

In response to COVID-19, Solve M.E. co-founded the Long COVID Alliance (LCA), a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness. Since the LCA’s launch in early 2021, we continue […]

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Advocacy Director Emily Taylor On Sharing the Success of ME/CFS Advocacy Week

During Solve M.E.’s ME/CFS Advocacy Day 2018, 102 people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and their loved ones joined us in the largest Capitol Hill action for the disease to date. Advocates from across the country called for action and funding for ME/CFS research as part of the second annual ME/CFS Advocacy Day. Throughout […]

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