The long-lasting effects of Covid-19 — or Post Covid conditions as they are sometimes known — are wide-ranging, including pain, fatigue, memory problems, and mental health symptoms. These can make it challenging for people to maintain their daily routines, work, attend school or socialize with loved ones. They can even result in disability. Adding to the challenge is the fact that the symptoms are often misunderstood, dismissed or ignored by health care providers (HCPs).
Insider has found some support groups for Post Covid sufferers turn to online support groups for solidarity and encouragement. “It makes me feel visible and understood,” says a woman who got Covid in March 2020. “The encouragement I get from these groups helps me push through my symptoms.”
Another participant in a small WhatsApp group describes the sense of community in the group as being vital to her recovery. Similarly, a participant in a larger Facebook group says the sense of community in the group allows them to share experiences and advice, as well as receive help with accessing resources like housing and transportation.
In addition to a variety of local and virtual support groups, several nonprofit organizations offer comprehensive resources for people with Long COVID, ME/CFS and related illnesses. For example, MEAction Network has a range of virtual and international support chapters that can be sorted by location and affinity (including caregivers, parents, seniors, veterans, BIPOC, pediatrics/teens, healthcare providers, religious groups and others).
Other sites offer community forums where people can communicate with each other, or keep a diary of their symptoms to share with their doctor. One such site, Solve M.E, has a private group for people with long COVID and ME/CFS and is run by a board member who lives with the condition. Other advocacy groups include the ME/CFS Network for Social Justice, a national grassroots organization that provides a range of services and support, and Dysautonomia International, a nonprofit that offers global and local support for autonomic nervous system disorders.
The need for support is particularly important because HCPs may not always understand or believe that patients experience the symptoms of Long COVID, especially if they don’t fit into traditional diagnostic criteria, such as low body temperature and a negative coronavirus test. And because a diagnosis can be delayed, many people who are struggling with these symptoms struggle to find reliable information on their own.
The findings of the research suggest that HCPs can help address some of the issues that lead to people seeking out these groups by providing more comprehensive education about the health consequences of long COVID, embracing patient-centered approaches and recognizing that normal laboratory or imaging findings do not invalidate a patient’s symptoms or illness. The research also highlights that people who suffer from these symptoms, which are sometimes referred to as chronic fatigue syndrome, may benefit from keeping detailed medical records and communicating their experiences to a trusted healthcare provider. This includes asking about any mental health concerns, as many of the symptoms of long COVID and ME/CFS can be exacerbated by stress and anxiety.