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A Plea to Maskless Healthcare Workers from Vulnerable Patients
A viral article with useful talking points for asking medical professionals to mask. Includes language for responding to accusations of being psychologized or labeled “anxious,” and also provides examples of what a good mask policy for healthcare settings would look like.
Clinician’s Pacing and Management Guide for ME/CFS and Long Covid
Created by the Patient Led Research Collaborative, this document explains post-exertional malaise (PEM), the difference between PEM and deconditioning, and why graded exercise therapy (GET) is not a safe or appropriate treatment for people who experience PEM. This is a good resource to share with doctors and physical therapists who are open to having a conversation about PEM but want to see hard research.
Functional Neurological Disorder Is Not An Appropriate Diagnosis for People with Long Covid
Op-ed published in STAT by two leading researchers and a public health journalist about why Long Covid patients should not be diagnosed with FND. STAT is a highly trusted source of information for clinicians, meaning this piece can be useful to show to your doctor if you are asking them to reconsider their diagnosis or refer you for a “second opinion.”
This 10-minute test can be performed at home or in a doctor’s office to screen for various types of dysautonomia, including POTS. This can help patients access diagnosis and treatment if they are too sick to undergo the more formal tilt table testing, or it is not available in their area.
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A self-advocacy guide to accessing healthcare, benefits, and social services while housebound or bedbound in the US, with a focus on ME/CFS.
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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Coming soon.
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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.
Alliance of home care consumers and workers organizing to make long-term care services available to everyone who needs them and to improve wages and working conditions. Offers resources and support for people navigating the CDPAP restructure.
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Pacing and Management Guide for ME/CFS
Created by ME Action, this four-page easy-to-read guide covers the basics of several pacing strategies and provides suggestions for adapting and prioritizing activities. There is also a longer version aimed at clinicians (doctors) with research citations, created in partnership with the Patient Led Research Collaborative (linked under the Medical Care section above).
Created by the Bateman Horne Center, this 50-page guide is extremely comprehensive but may be overwhelming because of its length. If you have a caregiver you trust, consider asking them to read through the guide first and identify smaller sections that seem most relevant to your situation and needs. If you have access to a printer, consider printing to reduce screen fatigue.
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Hosts several patient support groups on Facebook, as well as a monthly Zoom call for caregivers.
Hosts many patient support groups on Facebook, including many associated with state chapters which maintain lists of recommended medical providers.
Hosts twice-monthly support groups for patients and caregivers on Zoom, facilitated by a licensed professional.
Well-moderated international support group on Facebook for patients with severe illness. Caregivers may join if the person they are caring for vouches for them. Not affiliated with the UK advocacy group 25% ME.
A free peer-led virtual group for people with chronic illness and/or disabilities to build community and hold space for each other. Anyone 18 or older who has disabilities or chronic illnesses can join.
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Created by the Patient Led Research Collaborative and available in English, Spanish, French, and Portuguese. Contains up-to-date information and statistics on relevant topics including prevalence (how many and what types of people have Long Covid), symptoms, functional limitations (things people may struggle to do because of Long Covid), and impact on the economy and people’s ability to work. This is a good resource to share with doctors, social workers, or anyone who is comfortable reading semi-academic language.
BIRCH (Black Indigenous Racialized Covid Health)
Plain language posters illustrating symptoms of Long Covid with imagery featuring people of color. Created by graphic designer and first-waver Hazie Thompson, and available in English and Spanish, in a variety of formats for printing and distribution on social media.
Posters, billboards, and merchandise raising the alarm about Long Covid as a mass disabling event. Created by a grassroots art-activist collective of people with Long Covid based in Berlin.
Plain language, medically reviewed resource sheets created by Long Covid Justice and The Sick Times. Available in digital and print formats in both English and Spanish.
A campaign from ME Action to encourage medical professionals to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS.
Award-winning 2017 documentary produced and filmed by Jennifer Brea, chronicling her own experience with severe ME alongside interviews with doctors and researchers.