People with Long Covid and ME/CFS are at disproportionately high risk for domestic violence because they often need assistance with activities of daily living (ADLs) and have little freedom to choose where they live. Without access to professional care in the home, they are often forced to choose between staying with unsafe partners or family members, and moving into a nursing home.

Caregiver abuse is a type of domestic violence and can include withholding food, withholding or improperly administering medications, preventing the sick person from seeing doctors, and forcing the patient to undergo dangerous “treatments” such as graded exercise therapy, which has been proven to worsen illness. Caregiver abuse can also escalate to filicide.

While some domestic violence charities do specialize in serving disabled people, it can be difficult to impossible to get a placement in a domestic violence shelter if you need someone to help you with ADLs or need to be able to prepare specialized meals. Many disabled people are justifiably afraid to seek help from Adult Protective Services (APS) for fear of losing independence and legal rights.

Long Covid is increasingly rendering people homeless, as reported by The Sick Times and Rolling Stone. Many people with Long Covid and related illnesses such as ME/CFS are unable to access homeless shelters because they need to be able to prepare specialized food or have a caregiver assist with activities of daily living. Even if they can get into a shelter, the lack of mask requirements and air filtration makes these spaces fundamentally unsafe.

Long Covid Safety Net is advocating for multilayered solutions to medical homelessness, which would include state-funded peer respites and expanded access to housing vouchers intended specifically for disability.

The housing voucher landscape in New York City and State is extremely bleak. Section 8 waitlists are closed in most jurisdictions. The CityFHEPS voucher, ostensibly billed as an eviction prevention program, can only be accessed if someone is already living in a shelter. Funding for the Rapid Housing Transition Program (RTHP), which serves people with frequent hospitalizations or other high Medicaid costs, has been indefinitely suspended. The Medicaid Nursing Home Transition and Diversion (NHTD) waiver, which sometimes includes a housing subsidy, requires a lengthy bureaucratic process to access. Long Covid Safety Net has evidence that screening for the NHTD waiver is being conducted in a discriminatory manner against applicants who are under 65.

There is a long history of chronic conditions being incorrectly labeled as psychological, in order to deny patients insurance benefits and proper healthcare. This pattern, which can be seen with ME/CFS and Gulf War Syndrome, is now repeating itself with Long Covid. The inevitable outcome of patients being hospitalized against their will, often as a tool of abuse by parents or partners.

Psychiatric wards are not a safe place for people with Long Covid (or for anybody, one might argue). Most psych wards are not equipped to accommodate patients’ existing treatments, such as as IV fluids, MCAS-safe diets, and pacing. People with Long Covid or ME may be forced to exercise or over-exert themselves, and they may even be told they are faking or exaggerating their illness for attention. Comorbidities such as MCAS and gastroparesis are often misdiagnosed as eating disorders, with patients being forced to eat foods they cannot digest, or simply go hungry. The threat of this mistreatment makes it even harder for people with Long Covid who do have mental health needs to seek safe treatment.

Media coverage of this issue is limited and largely frames psychiatric hospitalization of people with Long Covid as an unfortunate misunderstanding that can be rectified by provider education. While education is urgently needed, Long Covid Safety Net believes that the mental health industrial complex is an inherently violent institution—and this is also reflected when people with Long Covid attempt to access social services such as housing and case management.

At the very severe end of the spectrum, ME/CFS and Long Covid can cause life-threatening malnutrition, with some patients requiring tube feeding. Several factors can contribute to this, including gastroparesis, mast cell activation syndrome (MCAS), and being too weak to chew and swallow. Many people with ME/CFS and Long Covid are incorrectly diagnosed with eating disorders (leading to forced psychiatric hospitalization), despite insisting that they are hungry and want to eat.

Delays in accessing nutritional support such as tube feeding can lead to tragic consequences, as seen in the case of Maeve Boothby O’Neill, whose death has triggered an NHS inquiry in the UK.

Access to Medicaid-funded “home and community based services,” including help with personal care and housekeeping, is essential for preventing both institutionalization and abuse. Without these services, people with severe Long Covid and ME often have to choose between living in a nursing home or relying on unsafe partners or family members for care.

In New York State, the program that allows people to hire and train home care workers of their choice, known as CDPAP, is currently under attack, with hundreds of thousands of consumers at risk of losing their services. At the federal level, attempts to restrict eligibility for Medicaid could also make it harder for people to maintain their access to care.

Many people with Long Covid and ME are unable to use the phone, either due to audio processing difficulties including severe hypersensitivity to sound, or because the physical and cognitive exertion required to produce speech triggers PEM. Even when it is explicitly requested as an accommodation under the ADA, many medical institutions and social services agencies refuse to communicate with patients via email or text message, incorrectly citing HIPAA. While appointing a loved one or caregiver as healthcare proxy may be an option for some, this presents undue administrative burden and requires patients to give up a crucial piece of their autonomy—often at significant risk to their safety.

Medical case management, such as the Medicaid-funded Health Homes program in New York State, is designed to help people with multiple chronic conditions manage complex social services needs and stay on top of their healthcare. However, referrals to social work generally happen in the context of a hospitalization; because most people with Long Covid and ME are never admitted to the hospital, they never get connected to these programs. Additionally, the vast majority of social workers have zero education about these diseases.

Similarly, in the context of homelessness and domestic violence, it is extremely difficult to obtain a housing case manager without first being referred from a shelter. However, because shelters are inaccessible, many people who become homeless from Long Covid or ME never enter a shelter and are therefore never linked to services.