Support groups are invaluable resources for patients and caregivers. There is nothing like sharing an experience to help mitigate some of the isolation a chronic illness causes. There is also no better source of information on where to find helpful clinicians and clinics.
With the advent of the Internet, there are many support groups that meet online. Phone groups are also an excellent way to make contact with other people with ME/CFS.
ME/CFS Weekly Phone Support Group
Saturdays 8pm EST Participant Instructions:
Dial-In Number: 609-746-1155
Enter your Access Code: 915110 followed by # sign.
Meets 1:00 pm – 2:00 pm MST second Tuesday of the month.
The Bateman Horne Center’s ME/CFS support group is led by Liz Sherlock, PhD, a clinical psychologist who has experience with chronic illness, including having family members with ME/CFS. Support groups are free of charge and held online. This online support group is facilitated via Zoom teleconferencing.
ME Partner Caregivers Support Group
This group is sponsored by MEAction. See schedule for dates and times.
Every month the Massachusetts ME/CFS & FM Association hosts several support groups. Sign up for their monthly newsletter to receive the schedule. The Association also hosts “Sunday Conversations with MassME,” a monthly speaker series with discussion on a wide variety of topics. These will take place via Zoom on the 3rd Sunday of each month at 4 p.m. ET, and are free and open to anyone. Presentations will be recorded for later viewing. Registration is required. Read more HERE.
Online Zoomers ME-FM-MCS Support Group
This is a virtual support group where people with ME, FM, MCS/ES or CFS can meet on the 1st Tues of the month at 1:30pm ET via ZOOM video conferencing. To register, go to cind.link/onlinezoomers/register
NURA is a new online social network, specifically designed for adults with long COVID, ME/CFS and related conditions like POTS and fibromyalgia. It is also open to carers. NURA offers several community spaces where members can talk and share meaningfully, fortnightly Zoom support sessions, information and resources, and access to the fortnightly, heavily resourced newsletter with updates and fun snippets relevant to ME/CFS.
CFSBayArea is an in-person & online support group for patients, friends & allies from the Bay Area.
Membership and meetings are free:
In-person 1st Sunday of the month 1-3pm pst
Online 3rd Sunday of the month 1-3pm pst
For membership interest please visit us HERE at CFSBayArea.com
Group founder contact: Monica, CFSBayArea@yahoo.com
Invisible Youth ME-FM-MCS Support Group
This is a support group for youth aged 13-21 that suffer from Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) or Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS). It is currently scheduled to run every other Saturday from 3-4:30 pm ET. Additional information can be found in Facebook group: www.facebook.com/groups/invisibleyouthgroup
Meetup has a number of groups for CFS and chronic illness. You can search the list here: https://www.meetup.com/topics/cfs/
Facebook has many support groups:
North Carolina and Ohio ME/FM Support Group
M.E. / C.F.S. / Fibro Support Group for sufferers & carers
ME/CFS/FM Private Support Group
Parents of children with M.E./CFS Support Group
Parents of adult children with ME/CFS
Pregnancy and Parenting with M.E.
There are also groups that meet in person. These offer the chance of making some local friends. (Please search in the box below.)
Forums are another excellent way to find support groups. Topics on these groups cover treatments, recommended clinicians, symptoms, coping, events, and anything else that might be of interest to the ME/CFS community.
Phoenix Rising
Health Rising
ME-CFSCommunity
Foggy Friends Where ME/CFS Sufferers Unite
For a good discussion on why support is necessary, as well as links to groups, see: Finding Connection Within ME.