Resources

Webinars 

“Resourcing the HIV Community to Face COVID and Long COVID in 2022”

In February and March of 2021, we put together a set of events and assessments to resource the HIV community to face the ongoing COVID pandemic. We found that HIV communities have a widespread need and eagerness for information, resources and support on a range of issues and concerns about Covid-19 and Long COVID. Our project, designed for rapid implementation and analysis, included an online survey in English and Spanish; a multi-panel Zoom-based webinar in English, with Spanish and ASL interpretation and CART transcription; and a leadership meeting for program sponsors to discuss findings, recommendations and next steps. In designing the project components, we ensured that each conveyed accurate, accessible information while also collecting data and perspectives. 

Reports and Recommendations

Support Groups

Click here for a printable PDF with scannable QR codes, created by Body Politic’s Alison Sbrana.

Body Politic

The first COVID support group, created by patients for patients in March 2020, is a moderated and channel-organized group on the private Slack chat platform. A global leader in Long COVID advocacy and research, they offer educational and social events, as well as research, media, and advocacy opportunities to all members. Open to anyone with prior Covid-19 infection and their caretakers.

Subgroups: 70+ channels for body systems, demographics (BIPOC, LGBTQIA, Spanish speakers, medical professionals, teachers, etc.) & more.

Technological difficulty: easy to moderate

Size: large (12K+ global members)

Black Covid-19 Survivors

A private Facebook group for Black COVID-19 survivors. From the group: “Black and African American people have been hard hit by the COVID-19 pandemic during a time when we already face medical inequality and bias in diagnosis and treatment. Come share your story, your family’s story and let’s talk out what’s needed for recovery and reducing the spread.”

Technological difficulty: easy

Size: medium (1,700+ people)

#MEAction

Offering a variety of private Facebook support groups for Long COVID and ME/CFS. ME/CFS stands for myalgic encephalomyelitis, also called
chronic fatigue syndrome.

Subgroups: support groups for Long COVID and ME/CFS., state chapters for location-specific support & activism, pregnancy and parenting with ME/CFS, caregiver support group, military & veteran families

Size: small to medium

Technology difficulty: easy

Covid-19 Longhauler Advocacy Project

Offering a variety of private Facebook groups to create a space for advocacy, education and support for people with Long COVID. This group is led by a former paramedic firefighter who got COVID in March 2020. A great space to get involved with activism. State chapters also offer small support groups to help you find resources in your area.

Subgroups: small Facebook groups for US states

Technology difficulty: easy

Size: medium (state chapters: small)

Long COVID Families

Peer support & workshops for caregivers, children, & individuals with long-term complications from COVID-19. Spanish language support (particularly
for teens and school accommodation support) in progress – please check website. Also offers guidance on accommodations at school & work.

Subgroups: Spanish groups to come in the future (check the website)

Technology difficulty: easy

Size: small (100+ people)

Dysautonomia International

Offering a variety of private Facebook support groups for people with autonomic nervous system disorders. Dysautonomia can be common in people with Long COVID or ME/CFS. (POTS is a common type, but not the only type of dysautonomia.)

Subgroups: Facebook groups for all US states, as well as specific support groups for teens, college, LGBTQ+, Black community, and men

Size: medium

Technological difficulty: easy

Long COVID Support – Facebook

A large (50k+) private Facebook group offering support for Long COVID with international reach. This is a private group for people with Long Covid or people who are caring for someone with Long Covid.

Subgroups: none

Technological difficulty: easy

Size: small

Bateman Horne Center

Twice monthly support zooms facilitated by professionals, second and third Tuesday of each month 12-1:00pm PT. For individuals with ME/CFS, Long COVID,
fibromyalgia, dysautonomia and related chronic illnesses. As well as family
members, friends, and care partners.

Subgroups: none

Technological difficulty: easy

Size: small