Finding Support Groups and Doctors
By Bruce Campbell
[Note: Last updated September, 2019]
Looking for a ME/CFS or fibromyalgia support group or a doctor who treats people with ME/CFS and FM? Here are some ideas to aid your search.
Support Groups
Support groups can be a crucial coping resource when you have a serious illness. Contact with fellow patients counteracts isolation and provides an experience of being acknowledged and supported. Such contact can be a way to feel understood, comforted and inspired. Also, groups can provide information, such as names of local doctors who treat ME/CFS and fibromyalgia.
Groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from serious illness. And, finally, they can offer models of successful coping, thus dispelling fear. Similar experiences are available now on the Internet, at online chat rooms and message boards.
While support groups may be very helpful, not all provide a positive experience. Some groups are negative in tone, reinforcing a sense of victimhood. Some groups are dominated by one or a few people. Others focus on responding positively to illness and insure participation from all members who wish to speak.
Contact with fellow patients, especially in a group, can be very powerful. When such contact is negative, it can reinforce isolation and a sense of victimhood. But in a supportive atmosphere, it can be helpful and even healing. Contact with other patients may leave you feeling upset at times, but the discomfort should be followed by a new perspective on your situation, and increased confidence about your ability to manage the illness.
A good group is one in which you feel a sense of belonging, which gives you something positive to take home, either inspiration or practical tips, and which offers models of living successfully with illness.
We are not aware of any current lists of ME/CFS or FM support groups in the United States, but the ME Association has an extensive listing of local support groups in the UK.
Another kind of support is the professional help offered by counselors and psychotherapists. A sympathetic professional can offer encouragement, provide an outsider's view of your situation and give you continuity. If you're interested, you might look for one who specializes in working with people who have chronic illness. A local support group is often a good source of leads. Therapy can also be helpful for couples. It can offer a place in which the strains created by living with long-term illness can be explored.
Finding a ME/CFS or FM Doctor
How do you find a doctor who is knowledgeable about your illness and whom you trust? One good starting point is referrals from fellow patients. Support groups are often a good way to meet other patients. For a global directory of ME/CFS doctors, see the MEAction global directory of ME/CFS physicians. Also, some local chapters of the Arthritis Foundation in the provide physician referral lists for FM in the US.
Doctors' Guide to Diagnosing and Treating ME/CFS
Once you’ve found a doctor who might help you, you might consider giving her a copy of a publication written by a group of US doctors who specialize in treating people with ME/CFS. It offers a guide to diagnosing and treating the condition. The guide can be read, printed, and downloaded here.
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