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Building Communities of Understanding and Hope

“Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity,” reports Douglas Nemecek, MD, Chief Medical Officer of behavioral health in a major new study on loneliness that outlines the prevalence and significance of loneliness and social isolation, as well as a handful of coping strategies. This line of research holds particular significance for patients and caregivers of ME/CFS and FM, who may experience high levels of isolation as energy, hope, and social time drain away. As a result, loneliness can act as a serious and underestimated health risk for people affected by these illnesses. 

The solution? There are several ways to approach these challenges, but one of the best strategies for both patients and caregivers is to attend support groups. 

Bateman Horne Center offers a monthly patient support group every 2nd Tuesday at 4 pm.

These groups are led by Liz Sherlock, a psychologist with a PhD in counseling; her education and life experience has given her a great deal of expertise in addressing long-term pain, including having several family members with ME/CFS. Registration for these support groups is requested, as seats are limited to a maximum of fifteen people per session. Please visit the BHC event calendar for support group details.

Liz Sherlock, explains, “Support groups give people a space and time to connect with others who are facing the same struggles. People appreciate the opportunity to meet others, hear their stories, and tell their own. This process allows participants to express feelings, empathize with others and gain useful information about coping strategies. A group can reduce the sense of loneliness and isolation that is one of the most difficult things about chronic illness. This has both mental and physical benefits.”

While in-person support groups serve as a strong resource, they are frequently unrealistic due to either distance and availability restraints or a lack of the energy required to attend. A strong alternative is an online support group; such groups, whether on internet forums, Facebook, or some other site, can offer a sense of community, understanding, and support comparable to in-person support groups while mitigating distance and allowing for participation in short blocks of time that can be far less exhausting than in-person support groups.

When selecting online support groups, keep a few key criteria in mind. Be careful to select groups where everyone contributes, not just a small handful of the members, and avoid groups that are overly judgemental or belittle and demean members. Moderators serve a key role in upholding these criteria, so give strong preference to groups with moderators or administrators. Leave groups where you do not feel comfortable or included, and be wary of sites that promise to cure ME/CFS or FM – while many strategies can lessen symptoms, no medication, diet, exercise routine, or any number of other strategies have cured ME/CFS or FM.

Please note that while these resources are intended to benefit those affected by ME/CFS and FM, they are not endorsed by the Bateman Horne Center and individuals should carefully assess their value:

Living with ME/CFS

Pregnancy and Parenting with ME/CFS

Living with Fibromyalgia & Chronic Pain

Finally, while support groups are a useful resource for many people, they are far from the only strategy. Bateman Horne Center’s patient library  provides a wide array of materials for patients and caregivers alike, and our Youtube channel acts as a repository of our monthly educational meetings as well. If you are aware of additional support groups or networks please email us at [email protected] 

If you have appreciated these resources, please consider donating to the Bateman Horne Center as we continue to provide and expand resources and education for those living with ME/CFS and FM.