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Clinical Care Guide: Managing ME/CFS, Long Covid, and IACCs
A comprehensive guide compiled by the Bateman Horne Center that distills more than a decade of clinical expertise, research, and lived experience into a practical, step-by-step framework for assessment, diagnosis, and ongoing care.
A Long Covid Definition: A Chronic, Systemic Disease State With Profound Consequences
2024 consensus report from the National Academies of Science, Engineering, and Medicine. Defines Long Covid as “an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
2015 consensus report from the Institute of Medicine (now called the National Academy of Medicine) establishing updated diagnostic criteria for ME/CFS, which are currently used by the CDC. Also recommended changing the name of the condition to systemic exertion intolerance disease (SEID), but that recommendation was not adopted.
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Mayo Clinic Proceedings Continuing Medical Education (CME) aimed primarily at internal medicine physicians and other clinicians looking to learn more about ME/CFS and Long Covid.
Life-Threatening Malnutrition in Very Severe ME/CFS
Case report on five UK patients who required tube feeding and the barriers they faced to accessing care in a timely manner. People with very severe ME may suffer from malnutrition for a variety of reasons, including inability to swallow, severe gastrointestinal problems tolerating food (sometimes connected to mast cell activation syndrome), or simply being too debilitated to eat and drink.
Diagnosis of Mast Cell Activation Syndrome: A Global "Consensus-2"
Literature review by leading researchers including Dr. Lawrence Afrin, summarizing two general schools of thought in diagnosing MCAS.
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SSI/SSDI Outreach, Access, and Recovery (SOAR)
Specialized training in facilitating SSI and SSDI applications for people who are homeless or at risk of homelessness. The training is designed for service providers, but anyone can complete the modules online for free, and many of the recommendations are applicable even for applicants who are not homeless.
Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Academic article summarizing the approaches used by experienced clinicians and lawyers in successful ME/CFS disability claims, many of which can also be applied to Long Covid.
Documenting Long Covid for Disability Determination
Webinar and slides from the SOAR training program, outlining how Disability Determination Services staff are evaluating claims for SSI and SSDI due to Long Covid.
How to Navigate Disability Insurance with ME/CFS: A Focus on Social Security
Slides from a webinar presented by Solve ME—aimed at patients but may also be useful for medical case managers or disability application facilitators. Also briefly covers private disability insurance (STD and LTD).
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Produced by the Autistic Self-Advocacy Network but applicable across disability communities, this frequently updated toolkit defines filicide as a pattern of violence that starts when a parent or caregiver murders their child or adult relative with a disability and continues in how these murders are reported, discussed, justified, excused, and replicated.
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Nonprofit whose mission is to protect and advance the rights, autonomy, opportunity, and dignity of people with speech-related disabilities through public engagement, policy and practice reform, and systemic advocacy. Provides information about language-based augmentative and alternative communication (AAC) systems and devices.
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Medical case management program for Medicaid consumers who have at least two chronic conditions (or at least one of the following: HIV/AIDS, serious mental illness, or sickle cell disease). Most people with Long Covid will meet the diagnostic criteria for multiple comorbidities—although obtaining those diagnoses can be fraught and time-consuming.
NYLAG Evelyn Frank Legal Resources Program
Part of the New York Legal Assistance Group, this program helps disabled people navigate eligibility for Medicaid and home care services through educational materials and direct representation. Can help clients whose income is too high for Medicaid establish a trust in order to qualify.
New York Independent Assessor Program
The first step in applying for home care is a two-part assessment, which the patient must schedule over the phone. If the patient is unable to make phone calls, they may designate an authorized representative to call NYIAP for them by faxing or mailing this form.
Provides resources and peer mentorship for navigating the Consumer Directed Personal Assistance Program (CDPAP), which allows disabled people to choose and train their own home care workers rather than receiving services through an agency.