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Thankfully, many dedicated persons with and organizations for CFS, FMS, & related disorders have resources available on a variety of subjects. We've grouped similar items, references, and links to facilitate research and referencing. There are several pages, but a complete index on each page. Use 'Search' page to find more in our newsletters, media pages and other sections.
Advocacy, Awareness Day, Lobbying, Polls
1. Current Advocacy & Awareness Activities
2. Articles, Links about Awareness Day, May 12, Lobbying, Advocacy
3. Awareness Products: CFS, FM, OI Themed T-Shirts, Mugs, Bags, etc.
4. Polls, Petitions, Surveys: Be Counted, Participate
Current Advocacy & Awareness Activities
On Advocacy, Awareness Day, May 12, Lobbying, Previous Events
Awareness Products
May 12 Awareness Day and other CFS/FM/etc Items for Sale, Free Items
Lapel Pins, Posters, Bookmarks, Mugs, Totes, Notes, Bumper Stickers, Shirts, etc.
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Slamdunks Apparel, Cards, and Gifts at Zazzle, Proceeds to CFS & FM Research
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Chronic Fatigue Syndrome Public Awareness Campaign Products
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The Store of CFS_FMS_MCS Items at Cafe Press
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The Store at The CFIDS Association of America
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The Store at FibroHugs
- The Store at FM Network
- The Store at NFMCPA
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The National FM Research Association Bracelet
- The
National FM Research Association Pin
- CFIDS
Postcards of Sick Humor by Sharon
- CFSdays
Store of Humorous Items by Bill
- CFS
Seasonal Cards by Hallie
- Cartoons
about life with CFS Calendar 2007 by Han-Michael Sobetzko
- Fundraising
Shop at The National CFIDS Foundation - Holiday Cards, Cartoons
- FM Coalition International Awareness Store
- Fibro
Queen T-Shirt and Totebags
- Seasons
of Hope Postcards by CF-Alliance
- Rest Ministries Invisible
Illness Awareness - 'But you Look so Good' Items
- Girlie
Girls CFS Awareness Beaded Bracelets
- Kokobaby Health
(CFS, FM, Lupus, Pain) Shirts, Mugs, Cards, Prints at Zazzle
- The
Get Well Gift Store: "Fibromyalgia is a Pain in the.... Well, Everywhere"
-
ME / CFIDS Awareness Ribbon Mouse Pad
Documentary Video for Advocacy, Awareness, Education
- Living with Fibromyalgia (DVD)
- I Remember Me (DVD/VHS)
- Show Me Where It Hurts (DVD)
For book, video, and more ideas, visit our Bookstore Pages
Polls, Petitions, Surveys
Carers & Caregivers
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The Spoon Theory explanation of how the chronically ill have to strategize their energy
ButYouDontLookSick.com
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A View From Outside: How To Help A Person with CFIDS (PWC)
Jean Mosher, RN
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How to be a Better Friend, Spouse, or Relative to Someone with FM
Advice from a psychologist whose marriage is impacted by FM.
NFA FM Aware Online 2007
- Fibromyalgia is a Friendship Challenge—and an Opportunity
Friends can be a great support to the FM
patient—but their misunderstanding of fibromyalgia can also cut very deep.
Elena V. Gonzales, PhD, 2007
- How do I help my spouse with CFS/FM?
Q&A, Our Way - CFSupport
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When a Loved One Has Chronic Fatigue Syndrome or Fibromyalgia
BeliefNet
- Keeping the Caregiver Afloat
Miller Iger / CFIDS Chronicle
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Living with CFIDS: A Family's Struggle Searching for hope
Moir / CFIDS Chronicle
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Living with CFIDS: CFIDS from a Husband’s Point of View
Stout / CFIDSLink
- A
Letter to Friends [about my weird illness]
Antenen / CFIDS Chronicle
- The
Open Letter To Those Without CFS/Fibro... FM/CFS Foothold
- The
“Invisible Elephant”: What Our Friends Might Like
to Know ImmuneSupport
- Letter
to people that don't have FM and/or MPS
Mandurah Support/Education Group
- A
Letter from a Friend who Suffers with chronic fatigue syndrome ChronicFatigue.org
- Sleepydust
Online Video for the friends and family of ME/CFS/PVFS sufferers.
- CFS
Caregivers: Resources for Caregivers Greg
Ross
- Caregivers
& Care Receivers: A Difference in Perspective Nat'l Family Caregivers Assoc
- Family
and Friends CFIDS Association of
America
- For
Parents of Sick and Worn-Out Children Frank Albrecht
- Friends
and Family Elaine Katz
- When
A Loved One Has Fibromyalgia, How Can I Help? Jim Kuhn, FM Aware
- To
Love, In Sickness And In Health Lisa Lorden, FM Aware
- Guide
for Relatives and Significant Others of Fibromites We Are FMily
- How
to Kill a Sick Friend Sue Klaus
- My
Son's Strength Terry Woster, CFIDS
Chronicle
- National
Family Caregivers Association NFCA
- Thank
You for Caring: A Tribute to CFIDS Caregivers The
CFIDS Chronicle
- The
Rewards of Devotion: Three CFS Patients and Their Caregivers ImmuneSupport
- The Caregiver
"Road Trip" Lori Flaherty, CFIDS
Chronicle
- The
Challenges of Parenting a Child with CFIDS The
CFIDS Chronicle
- To
My Husband, After One Year Robyn
Pollman
- Being
a PWC's Caregiver: Stress & Satisfaction Assessments
of CFIDS Caregivers
- What
your Friend or Family Member with CFS Needs You to Know Sue
Boettcher
- Understanding The Caregiver For Chronically Ill:
The Person Behind the Chair Choosing Divorce (Part Two) Ann Novick |
Jewish Press, NY - Feb 7,
2007
First
she [a care giver] was diagnosed with fibromyalgia, then chronic
fatigue syndrome. She
became ill with shingles and chronic headaches. Her blood pressure
soared. ... Coping with chronic illness is very hard. The
lives of
those coping with it are complicated. More complicated then most of us
can even imagine. Some people stay in the marriage because of the
children. Some leave for the very same reason. Many leave so they can
have children. Many leave simply so that they can both survive the
stress the illness brings. We should not presume to judge anyone in
that situation for making the decision to stay or leave the marriage.
Our job is to lend support. Everyone coping with chronic illness
− the
one who is ill, the spouse, all members of the family and even close
friends, all need our support. They do not need our criticism or our
uninformed advice, just our support. And that is the only thing we
should feel compelled to give. The
Understanding the Caregiver For Chronically Ill Series.
- Support
a Loved One With a Chronic Illness Revolution
Health
- When
Husbands are Caregivers Rest
Ministries
- Well
Spouse Foundation WSF
- National
Family Caregivers Association NFCA
-
Medical Identification Jewelry for Family Caregivers Protects Loved Ones in Case of Emergencies
National Family Caregivers Association
- For
the Caregiver: Principles of Self-Advocacy NFCA
- Virginia Voices in Action (for Parents of Disabled Children and Adults)
VIA
Chats, Forums, & Penpals
- Brainfog
- Ally's CFS/ME forum, chat room; free e-cards, newsletter
- Canberra
Fibromyalgia and CFS Pages - Email penpals
- CF
Alliance - Penpals for PWC's, family members, and caregivers
- CFS
Groups - CFS email discussion groups at Yahoo! Groups
- CFS
IRC Chat - Internet Relay Chat on CFS
- CFS
Meetups - Meetup with others who suffer from CFS
- CFS-L
- CFS patients email discussion group; also is the newsgroup alt.med.cfs
- CFS-Y
- Email discussion group and IRC chat for PWC's age 25 and under
- CFSFMExperimental
- high volume, large Yahoo discussion group
- Co-Cure
- Comprehensive listing of e-lists, newsgroups, bulletin boards,
and chat rooms
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EGGdish - Mind-Body-Spirit Gratitude Group of CFSnova group
- Fibro Hugs - chat room, newsletter, articles, store
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Fibro Splash - email discussion group, in a Christian environment
- Fibro Talk - chat, forums, email support group
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FMS Groups - FMS email discussion groups at Yahoo! Groups
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FMS Newsgroup - FMS patients discussion group alt.med.fibromyalgia
- MCS Chat MCS Blog, message board, and live chat on MCS
- ME Aware Blog
-
ME/CFS Community Events, Forum, Photos, Videos, More - new!
- Men with Fibro Forum - more men than women, visiting
professionals, spirituality
- My Fibro
Friends Support Group Forum - hosted by Tamara Peters
- My Fibro & Lupus Support Group Forum by Carolyn Glein
- OI
Groups - OI email discussion groups at Yahoo! Groups
- Parents Raising Children While Coping with CFS/FM - Facebook
- The
Pediatric Network - Chats on CFS, Fibromyalgia, and
Orthostatic Intolerance
- ProHealth.com
- Chat rooms, message boards, library
- We Are Fmily - Moderated chats
- Alt.med.cfs - at Google Groups
- Alt.med.fibromyalgia
- at Google Groups
Blogs (Web logs)
Poetry, Art, & Film: Reaching Out via Creative Expression
Support Groups: About
How to Start a Support Group
In the Media About Support Groups
Quotes, Studies about Support Groups
- "But I don't know how to go about starting a support group. It takes more
than one." Certainly, Briggs isn't the only one who feels
this way. Despite long lists of support groups offered by local hospitals and community
organizations -- everything from depression to grief to attention
deficit disorder to a whole host of cancers -- there are still many
diseases that have no outlet.
... "Having the support of other people who have to deal with chronic
pain is very beneficial," McCann said. "Talking about it and getting it
out, rather than keeping it in, keeps you from getting depressed -- and
I was depressed when I started the group. "People around you try to
understand, but in all honesty, they
don't. The only people who know are those who experience it
themselves." Research has found that belonging
to a group and talking to others
with common problems can alleviate mental stress, making treatments
more effective.
Where's my support group? Portsmouth Herald News, NH - Feb 4,
2007
- "An
understanding approach by the physician and the
patient's participation in a well-run support group may have
considerable therapeutic benefit."
- David A. Nye, M.D.
A
Physician's Guide to Fibromyalgia Syndrome
- "Support
groups help a lot with understanding the disease, coping with the
disease, getting the best out of life, breaking down barriers and
overcoming hurdles."
Dr.
Charlene Hafer-Macko, associate professor
of Neurology and Medical Director of University of Maryland's
Myasthenia Gravis Center.
Struggling with having an 'invisible disability' Annapolis
Capital, MD - Feb 4, 2007
- A December 2005 study found that support groups
are
reported as helpful by people with chronic fatigue syndrome and
fibromyalgia. About 2/3 said the top benefits were illness
legitimization and finding helpful new information. More than 1/3 also
said they gained help finding or dealing with doctors. The researchers
point out, however, that active members reported greater symptom
severity and less illness improvement than inactive group members or
those who no longer attend meetings. The most frequently reported
reasons for dropping out were inconvenient location or time, too much
negative talk or complaining, too sick to attend, and illness or coping
improvement.
Friedberg, Leung, Quick; Journal of
Rheumatology
- "Many professionals have
seriously
overestimated the risks and underestimated the benefits of online
support groups and other online health resources for patients, probably
because they do not operate within our familiar professionally centered
constructs." &
"In retrospect, the most important thing I (DH)
have
learned from our online group was that patients want to know about, and
in most cases are perfectly capable of understanding and dealing with,
everything their physician knows about their disease and its
treatments."
Hoch
& Ferguson (2005) What I've Learned from E-Patients.
PLoS Med 2(8)
- "One thing he [Dr. Frank Scifo, family
practitioner in
private practice in Stratford, CT] recommends for most patients is
attending a support group. Since it took a long time for some of these
patients to receive validation from the medical community, being in a
group of people who support them and acknowledge their illness can be
immensely helpful, Scifo said."
Too tired: CDC Gives Credence to Diagnosis of Chronic Fatigue Syndrome
Connecticut Post - September 20, 2006
- "The
findings of the current study, however, seem to suggest that that there
is a somewhat delicate balance between helpful forms of support and
those that are unhelpful and result in alienation and isolation.
Participants in the current study noted, for example, that groups led
by a knowledgeable facilitator were less likely than self-help groups
to deteriorate into depressing venues for the venting of rage and
misery. Future attention may need to be paid to the formation and
functioning of FM support groups."
Individuals’
Descriptions of Living With Fibromyalgia
Margaret Mui
Cunningham and Carol Jillings
2006; 15; 258 Clin Nurs Res
Disclaimer:
NoVA CFS/FMS Support Group members are not medical,
counseling, or legal professionals. Please seek qualified practitioners
for diagnosis,
treatment and legal advice.
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