Finding a Support Group for Chronic Fatigue

Chronic Fatigue Syndrome (CFS) patients may find it therapeutic to meet with other people who have this illness, and often this can be accomplished by joining a local CFS support group. Review the following information carefully to locate a resource that is reliable, convenient, and comfortable to you.

How to Select a Support Group

Support groups are not appropriate for everyone, and some CFS patients may find that a support group actually adds to their stress rather than relieving it. Most support groups are free, collect voluntary donations, or charge modest membership dues to cover basic expenses (e.g. refreshments at meetings or photocopying costs).

A useful support group should include:

• Both newcomers and patients who have had CFS for longer periods of time to provide a balance of perspectives for the group.
• People with whom the CFS patient feels comfortable.
• Leaders who empathize, gently draw out shy members, and keep others from dominating, and who distill discussion into useful information.
• A history indicating the group is stable and meeting the needs of its members.

Some support groups may put their own interests before those of the individual patient. Groups that engage in any of the following activities should be avoided:

• Promise sure cures and quick solutions.
• Conduct meetings that are mainly "gripe" sessions.
• Urge patients to stop prescribed treatment and recommend a single solution to their problem.
• Insist that patients reveal private or sensitive information.
• Demand allegiance to a cult-like, charismatic leader.
• Charge high fees.
• Require patients to purchase products.

Careful Consideration of Information about CFS

Because the cause of CFS has not been identified and its effect on the body is not well understood, periodically new unvalidated beliefs about cures and causes of CFS are widely circulated. These may be based on one or more recent reports from the peer-reviewed scientific literature, or they may evolve from the anecdotal remarks of clinicians or scientists at medical meetings. In some cases the origin is obscure. Even work that is of sufficiently high caliber to be published in the scientific literature is not without limitations and design flaws, and all published work needs to be verified and expanded on by others before it can be applied with confidence in clinical situations.

With regard to some stories that are currently circulating about CFS: (i) there is no evidence that CFS patients lose their fingerprints; (ii) there is no scientific evidence of any nutritional deficiency in CFS patients; and (iii) suicides of CFS patients have been reported, but the rate of occurrence has not been well-studied and it is not known whether the rate is higher or lower than what would be expected in the general population.

It is not practical to address all of the information that circulates or emerges regarding CFS. Simply be advised to be wary of information that points to sure cures or that alludes to pathological damage as a consequence of CFS. Specific questions should be discussed with the patient's physician, local or state health department, CDC, or one of the national patient support organizations.

Source: Centers for Disease Control and Prevention, August 2000