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 as volunteers with #MEAction and are conducted by video conferencing. You may also join by phone.
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Kim leads 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.
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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. To be added to the email list, contact Denise at caregiver@meaction.net.
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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.
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Educational Resources
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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 ME/CFS Crash Survival Guide, Working with your Medical Team page and the "How to Communicate With Your Healthcare Provider" sheet.
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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)
Fatigue symptoms: -
“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
Brain fog symptoms: -
“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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#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.
