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Support Groups and Online
Networks
Find a Local Support Group:
Create a Support Group or Host a
Pajama Party:
Find Support in Online Bulletin Boards and
E-mail Groups:
Enter our forum
to discuss managing chronic fatigue syndrome, fibromyalgia,
neurally mediated hypotension, postural orthostatic tachycardia syndrome, and related
conditions in the home, schools, and medical community. Share your ideas and
experiences with other parents, professionals, and young people.
Other discussion groups:
Pediatric Chronic Fatigue
Syndrome
Juvenile Fibromyalgia
Pediatric
Orthostatic Intolerance
Pediatric Chronic
Illnesses
Pediatric Chronic Fatigue
Syndrome:
(also known as chronic fatigue and immune
dysfunction syndrome and as myalgic encephalomyelitis)
- Live Chat on
Lauren's webpage
for teens and families coping with chronic illnesses such as CFS, FM,
NMH, POTS, and related conditions. Look for the "Chat Now" button.
Chat Schedule as of February 2003:
Tuesdays at 6:00 PM eastern standard time
Fridays at 7:00 PM eastern standard time
Saturdays at 7:00 PM eastern standard time
- The CFS Youth Discussion Group
(CFS-Y) is an e-mailing list for
people under the age of 25 with CFS, chronic fatigue immune dysfunction syndrome
(CFIDS), ME, or fibromyalgia (FM).
To subscribe, send the following command by e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-Y Yourfirstname Yourlastname
- SleepyTeenzzz Yahoo discussion
group is a web-based forum for young people with chronic fatigue syndrome.
Also see the main SleepyTeenzzz
website.
- CFS-20s is an e-mailing list for
20-somethings with CFS/ME/FMS, their spouses or significant others, and 20-somethings with
CFS/ME/FMS related conditions.
To subscribe, send the following command by e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-20s Yourfirstname Yourlastname
In addition to joining the e-mail list, you can talk with the members of CFS-20s on
Internet Relay Chat (IRC).
- Parents/Caregivers
of Young Persons with CFS Discussion Group
(CFS-P) is an e-mailing list for parents of children and adolescents with CFS/CFIDS/ME
and related conditions.
Subscribe to CFS-P
on this webpage.
Or send this command by e-mail:
Address: cfs-p-request@tertius.net.au
Subject: [Leave this blank]
Message: subscribe your_e-mail_address
- The
Young Person with CFIDS Parent/Teacher Bridge Builder - This website
includes a message board where
you can get support from other parents and educators
- CFS-YF: Friends and
Significant Others is a place for friends and loved ones of youth with
CFS to get support and find a greater understanding. If you know anyone who
would be interested in the group, they can subscribe by sending a blank e-mail message to: CFS-YF-subscribe@yahoogroups.com.
- CFS Caregivers is an e-mail
support network for those caring for loved ones with CFS. Its website includes
self-assessment tools and coping tips.
- CFS Chatbox for Carers is
a group for parents, partners and friends of people with CFS or FM
- UK Based ME/CFS Discussion Group
for members of the Association of Youth with ME (AYME), a charity
for people age 25 and under with myalgic encephalomyelitis (ME).
- Heather's Pen Pal Page
is a place for kids, teens, adults, and parents of people with CFS, FM, NMH, and related
conditions to list their e-mail addresses and find pen pals
- The Chronic Fatigue Pen Pal Alliance helps CFS, ME, and FM patients of
all ages establish enriching friendships. Download a penpal application from
www.funwishes.com or visit their
e-mail list home page.
Juvenile or Pediatric Fibromyalgia:
Pediatric Orthostatic Intolerance:
Support for any Pediatric Chronic Illness:
- Young Adults with
Chronic Illness - a discussion forum for youth transitioning to adult life
and responsibilities while coping with chronic health problems
- Let's Connect is a web and e-mail
based group of teens and college students who have faced chronic or life threatening
illness. You can participate in their message board, share your story on their website,
and submit your photo or e-mail address to the organization.
- Everyday
Warriors Parent Support Network for parents of children and young adults with disabilities
- Patchworx Online Community provides fun and support
for young people with disabilities, including chronic illnesses
- Sibling Support Project - peer
support and education for the siblings of young people with disabilities
- Transition Link - online community for
sharing ideas, strategies, resources, and information concerning the transition to
life after high school for adolescents with disabilities
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