CFSupport

The Northern Virginia
CFS/ME & FMS
Support Group
 
Resources for Connecting with Others

 Home          Email Us         Subscribe       Search      Sitemap 

Outreach Resources, References, & Links, by Subject

Connecting with Others


Connecting/
Outreach
(This Page)		 Chats, Pals, Forums Carers & Caregivers About Support Groups
Advocacy, May 12 &
Petitions, Polls, Surveys		 Blogs Poetry, Art, & Film


Page Full Directory of Topics
Coping To Newly Diagnosed Relationships Strategies, Stories, Stress
CFS/ME
&
FMS
Main Page
 CFS/FM Treatment Symptom Checklists Major Sites
CAM, Integrative Med Sleep,   Exercise Major Newsletters
Youth, Parents, School Orthostatic Intolerance More! Misc. Links 
Health Care Providers Memory, Cognitive En Español, Languages
Page II Conferences Laboratories Research Publications
Travel Tests  Government Info
Shopping Vitamins, Minerals,
Supplement Companies		 Health Product
Companies		 Medication &
Supplement Information
Food & Water
 Products Pharmacies
Financial,
Crisis Aid		 Disability Money Tips Emergency Services
Working While Ill
 Housing Legal Assistance
Compare & Contrast Irritable Bowel Vulvodynia
Chronic Lyme Chronic Pain Post War Illness
M. Chem Sensitivity Interstitial Cystitis More Syndromes
Connecting/
Outreach		 Chats, Pals, Forums Carers & Caregivers About Support Groups
Advocacy, May 12, Polls Blogs Poetry, Art, & Film
Inspiration Recovery Stories Gratefulness Spirituality

Thankfully, many dedicated persons with and organizations for CFS, FMS, & related disorders have web resources available on a variety of subjects. We've grouped similar items, references, and links to faciltate 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



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.
Polls, Petitions, Surveys

Carers & Caregivers

Chats, Forums, & Penpals

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.  
 Home          Email Us         Subscribe       Search       Sitemap
Updated April 14,  2009
1