Long COVID: How to Choose a Support Group/Network
How to Choose a Support Group
Long COVID is challenging in many ways. Each person’s experience is unique. Support groups/networks can help you feel that you’re not alone, deal with difficult emotions, and access information.
If you’re looking for a support group or network for people with long COVID, it may be difficult to know which are good choices. You may also be trying to figure out what is good vs. bad information about long COVID. Check with your Goodpath coach or your doctor if you’re in doubt. For additional help, read the following.
There are many sources of information about COVID-19 and long COVID. Keep in mind that:
There is a great deal of misinformation. For help, see:
Information about long COVID is constantly changing. What’s correct today may change tomorrow.
Look for information based on scientific studies.
It’s best to conduct your own Internet research. This means that you may need to spend some time reviewing information on several sites in order to get the correct information.
Personal reports or experience isn’t the same thing as scientific evidence. It’s possible that an individual may have correct information, however, you shouldn’t assume that’s the case.
Long COVID Groups and Networks
There are support groups, networks, forums, etc. on the Internet. They include several grassroots organizations supporting people with COVID-19 and long COVID. Some of them were formed by the COVID-19/long COVID survivors.
The following are long COVID groups and networks. Again, be careful with information and recommendations communicated by individual members - e.g. via Facebook communication.
Long COVID Groups and Networks
Long COVID SOS
The Patient-Led Research Collaborative
A global network of COVID-19 patients, chronic illness allies, and health and disability advocates. (Facilitate peer-support, cultivate patient-led research and public education, and lead community-based advocacy)
A grassroots movement educating and mobilizing COVID-19 survivors and connecting them with the medical, scientific, and academic research community, to help stem the tide of this pandemic and assist in the national recovery
Survivors Corps Partners and Alliances: Recovery Corps; COVID Patient Recovery Alliance
Survivor Corps Facebook Page
Post-COVID Care Centers (PCCC)
https://www.survivorcorps.com/pccc PCCC across the country bringing together multidisciplinary teams to address the issues of COVID-19 recovery with comprehensive and coordinated treatment pathways
Facebook Long COVID Support Group
A private group for people with long COVID or people who are caring for someone with long COVID
In addition to web-based support groups/networks for long COVID, you may be looking for support in your area. You may also have other needs. Contact your Goodpath coach or your doctor for assistance. Here are some other resources/suggestions.
Health and Human Services (HHS) Guidance on Long COVID as a Disability
Administration for Community Living (ACL) Resources for People with Long COVID and How ACL’s Disability and Aging Networks Can Help People with Long COVID
Canadian resources for Long Covid via canada.ca