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.

General Information

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:

How to Spot Misinformation

Evaluating Health Information

  • 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

Body Politic

https://www.wearebodypolitic.com/covid-19

Long COVID SOS

https://www.longcovidsos.org/

The Patient-Led Research Collaborative

https://patientresearchcovid19.com/

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)


Survivors Corps

https://www.survivorcorps.com/

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

https://covidrecoverycorps.org/

https://covid19patientrecovery.org/

Survivors Corps Partners and Alliances: Recovery Corps; COVID Patient Recovery Alliance

Survivor Corps Facebook Page

https://www.facebook.com/groups/COVID19survivorcorps

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

https://www.facebook.com/groups/longcovid/

A private group for people with long COVID or people who are caring for someone with  long COVID


Other Help

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.