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 participate in a support group.
Here are monthly caregiver support groups I recommend. They meet monthly via Zoom and/or have online communities.
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The Caregiver Wisdom monthly support group also serves as the partner caregiver support group for #MEAction. While we focus on partner caregivers of loved ones with ME/CFS, Long COVID, and other debilitating chronic illnesses, all types of caregivers are welcome. We meet the 1st Sunday of each month, at 12 p.m. PT / 3 p.m. ET. and usually meet for one hour. We start with a brief presentation on a helpful caregiving topic and then have small Zoom breakout rooms to connect with fellow caregivers on a more personal level.
To be added to the email list, sign up for the Caregiver Wisdom weekly email newsletter.
​Caregiver Wisdom also has an online community that's not on a social media platform. ​
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#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. It’s more of a traditional support group, where people get together to talk as a large group (they don’t have presentations). For people who are new to the calls, you can join up to an hour earlier to connect with Denise Lopez-Majano, the support group leader, who can give you a warm welcome and answer questions before you join the larger group. If you join the email list, Denise also sends a list of helpful resources discussed during meetings.
To be added to the email list, contact Denise at caregiver@meaction.net.
You can also join #MEAction's Facebook Group for Caregivers here. (Kim is a moderator for the Facebook Group.)
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Parents of Adult Children with ME/CFS started as a Facebook Group, and now offers monthly support group meetings on the 4th Wednesday of each month at 9 a.m. PT.
You can join the Parents of Adult Children with ME/CFS Facebook Group here. They announce their monthly support group meetings on the Facebook Group page.
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Parents of Kids & Teens with ME/CFS and Related Illnesses doesn't have monthly meetings but has a very active Facebook group. You can join the Parents of Kids & Teens with ME/CFS and Related Illnesses Facebook Group here.
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If you're looking for support groups for people with ME/CFS or Long COVID, the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society has created a list here.
I highly recommend Bateman Horne's support groups, which are facilitated by a therapist with a chronic illness perspective. They meet on the 2nd & 3rd Tuesdays of each month. Bateman Horne also hosts a monthly Peer Perspectives & Connections meeting with a brief presentation from a community member on a topic of their choice and breakout rooms for community connection. To learn more, see Bateman Horne's Support & Connect events webpage.
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Educational Resources
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Bateman Horne Center: Take special note of the Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions, ME/CFS Crash Survival Guide, Working with your Medical Team page and the "How to Communicate With Your Healthcare Provider" sheet. They also have a Patient Resources page and Care Partners Resources page with lots of helpful info.
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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. 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.
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“Unrest” documentary now streaming on YouTube for free. Here's the trailer and here's the full movie.
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“Long COVID Has Forced the U.S. to Take Chronic Fatigue Syndrome Seriously” (by Ed Yong, a Pulitzer Prize-winning journalist)
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Fatigue symptoms:
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“Fatigue Can Shatter a Person” (by Ed Yong, a Pulitzer Prize-winning journalist) and the accompanying podcast episode "Fatigue Can Wreck You"
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Seven short videos covering post-exertional malaise (PEM) by the Bateman Horne Center
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Brain fog symptoms:
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“What Makes Brain Fog So Unforgiving” (by Ed Yong, a Pulitzer Prize-winning journalist)
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“What Does Brain Fog Feel Like?” (Whitney Dafoe's blog)
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ME/CFS Nonprofit Associations
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Bateman Horne: A nonprofit focused on improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating their clinical expertise into medical education and research initiatives.
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#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.
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Solve ME: A non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, and other post-infection diseases.
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American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES): An organization dedicated to serving the needs of patients and caregivers through support, advocacy, and education.
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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.
