RESOURCES
ME/CFS/Long COVID Caregiver Support Groups
If you are a caregiver of a loved one with ME/CFS, Long COVID, or other debilitating chronic illnesses, you may find it helpful to attend a support group. The two free support groups below are led by fellow caregivers and are conducted by video conferencing. You may also join by phone.
​
-
I lead a support group focused on partner caregivers that takes place on the first Sunday of each month at 12 p.m. PT / 3 p.m. ET. While we focus on partner caregiver needs, all caregivers are welcome to join. To be added to the email list, contact Kim at kim.mecfs@gmail.com.
-
#MEAction's support group for all caregivers takes place on the third Saturday of each month at 12:30 p.m. PT / 3:30 p.m. ET. To be added to the email list, contact Denise at caregiver@meaction.net.
​
Educational Resources
-
Bateman Horne Center: The Patient Resources page and Care Partners Resources page have lots of helpful info, including diagnostic and treatment guides for ME/CFS, Fibromyalgia, and Long COVID. Take note of the Working with your Medical Team page and the "How to Communicate With Your Healthcare Provider" sheet.
-
U.S. ME/CFS Clinicians Coalition: Formed in 2018 by a group of American ME/CFS expert clinicians who have treated many thousands of ME/CFS patients. Founding members have served on the expert panel that authored the National Academy of Medicine’s 2015 report on ME/CFS, have authored primers on clinical management, have contributed to the CDC’s medical education initiatives, and have served on the Health and Human Services’ CFS Advisory Committee before it was sunsetted in 2018. Many founding members have been and continue to be actively involved in ME/CFS research. Key resources include the coalition's testing recommendations and treatment recommendations.
-
“Unrest” documentary now streaming on YouTube for free. Here's the trailer and here's the full movie.
-
“Long COVID Has Forced the U.S. to Take Chronic Fatigue Syndrome Seriously” (by Ed Yong, a Pulitzer Prize-winning journalist)
Fatigue symptoms: -
“Fatigue Can Shatter a Person” (by Ed Yong, a Pulitzer Prize-winning journalist) and the accompanying podcast episode "Fatigue Can Wreck You"
-
Seven short videos covering post-exertional malaise (PEM) by the Bateman Horne Center
Brain fog symptoms: -
“What Makes Brain Fog So Unforgiving” (by Ed Yong, a Pulitzer Prize-winning journalist)
-
“What Does Brain Fog Feel Like?” (Whitney Dafoe's blog)
​​
ME/CFS Nonprofit Associations
-
#MEAction: An international organization that is building a global movement to fight for recognition, education, and research so that, one day, all people with ME will have support and access to compassionate and effective care.
​
-
Massachusetts ME/CFS and FM Association: An organization supporting people living with ME/CFS and their families by connecting them to supportive resources and each other, and by educating and advocating to expand the ME/CFS healthcare and social service infrastructure in Massachusetts. You don't need to be a Massachusetts resident to join.