Support groups have been shown to help those affected by chronic and life threatening conditions. On-line groups are particularly useful, since it doesn’t matter what the weather’s like, if you have transportation or even what time of day or night it is. Before you participate in an on-line group consider the following:
• You will be able to interact with many people, even thousands at all hours of the day and night. However, not all members have your best interest at heart. The larger the group, the more likely some of these people will surface. On-line support groups are like any others in that there will be people you like and those that you don’t.
• Watch out for people trying to sell you something or claiming to be an expert. The “snake oil” salesmen hang around health care sites, particularly for those conditions where there is no effective treatment or cure. If it sounds to good to be true, it probably is. Check with your medical provider before trying something new.
A good article to read before signing up for a group is “What Everybody Ought to Know About Online Health Support Groups.”
There are at least two sites that are looking at collecting “outcome data,” what people are trying and what seems to be working. They are collaborating with doctors and various other medical groups and provide outcome information to site participants. These sites include:
Patients Like Me: Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.
Our operating costs will be covered by partnerships with healthcare providers that use anonym zed data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.
Provides on-going support, treatment information etc for the following conditions: ALS/MND, epilepsy, fibromyalgia, chronic fatigue syndrome, HIV/AIDS, Mood conditions (anxiety, bipolar, depression, obsessive compulsive disorder and post traumatic stress disorder), Multiple Sclerosis, Parkinson’s Disease, organ transplants and Rare Diseases (Corticobasal degeneration, Devic’s neuromyelitis Optica, Multiple System Atrophy, Primary Lateral Sclerosis, Progressive Muscular Atrophy and Prograessive Supranuclear Palsy).
Cure Together-Open Source Health Research: CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.
Alexandra Carmichael and Daniel Reda launched CureTogether in July 2008 to help the people they knew and the millions they didn’t who live in daily chronic pain. Starting with 3 conditions, it quickly expanded as people wrote in to request that their conditions be added to this ongoing study. CureTogether is currently funded by its founders and angel investment, as well as by book and product sales, clinic sponsorships of individual communities, opt-in patient recruitment for clinical trials, and a subscription-based Pro version of CureTogether (coming soon).
The quickest way to find an on-line group is to search using the condition name and support group. Some other places to look on-line are as follows:
Daily Strength: Network of on-line people sharing their advice, treatment experiences and support. Have 500+ groups for health issues and life challenges.
MD Junction: MDJunction is a Social Network that serves as a meeting place for people with health challenges, a comfort zone to help and get help. Today MDJunction is home to more than 630 Online Support Groups each dedicated to one health challenge, a place where thousands of patients meet every day to discuss their feelings, questions and hopes with like-minded friends. It is a proven way to find information, comfort, support and friendship with people who are in your spot and understand you best.
Some other social networking sites include:
Imedix: A more general social network for anyone who wants to talk about health. Users enter a question — like what to do about high blood pressure — and iMedix scans articles, videos and blogs that are ranked by other users on how helpful they are.
Inspire: Connects patients, families, friends, caregivers and health professionals for health and wellness support.