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 one of the caregiver support groups for #MEAction. While we focus on 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 presentation on a caregiver wellness 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 other support group for caregivers is more of a traditional support group, where it's more informal (no presentations), designed to foster connections, reduce isolation, and offer peer support. Meetings take place on the third Saturday of each month at 10:30 a.m. PT / 1:30 p.m. ET.
Denise Lopez-Majano, leader of this support group, follows up each meeting with a list of helpful resources discussed by the group. Contact Denise at caregiver@meaction.net to be added to this email list to receive Zoom info and resources emails.
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 via Zoom 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. 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.
