The Pros and Cons of CFS Support Groups

Image of group of people in circle

Should you join a support group?

Contact with other people who have CFS can counteract isolation and provide you with a sense of community, moral support and with valuable information. Self-help groups can also be a great way for you to help others, which in turn boosts your self-esteem.

At the same time, some support groups can be constraining. Some people who have attended meetings say that the suffering of the other people in the room is hard to handle and that people are complaining too much.

Will attending a support group be helpful to you?

Read this article to learn about the pros and cons of conventional support groups as well as the not-so-obvious support group where I found my happiness. And then, most importantly, try out a couple of support groups for yourself.

Let’s look in some more detail at the benefits a support group might be able to provide for you.

Get invaluable information on local CFS resources

There is no better place for finding out about CFS resources in your area than your local support group meetings. The last time I attended a support group, I was greeted by a combined 150 years of experience living with CFS. I learned about the best doctors, therapists, low-cost massages, and housing opportunities in my area.

Professional support groups

Some areas have support groups for people with chronic illnesses that are moderated by a professional, such as a psychologist or social worker.

These groups often aren’t free, but the presence of a skilled facilitator may ensure that the group environment remains positive, and that people who might potentially derail a meeting are mindfully kept on track.

If you have a professionally moderated support group in your area, try it out and see if it works for you..

What support groups don’t do very well

I’ve found that, although treatment advice is given freely and with good intentions during self-help group meetings, it often isn’t that helpful. The reason for this may be that CFS is so different for each person. The Vitamin B12 injections that Laurie, sitting to your left, is raving about, may not necessarily work for you. A treatment that helps one person in a support group often doesn’t help another.

Roland Staud, MD, author of a popular self-help book on Fibromyalgia, advises that if you hear treatment advice in a support group, take it with a grain, or even a pound of salt. Your peers in the support group are not medically trained and may be unable to screen out the scams from the bona fide treatments.

My tip is to use treatment advice from a support group as a starting point for doing you own research using reputable books (such as this and this one), or for bringing up a treatment with your physician.

How to find a support group

The most reliable way to find a support group in your area, is to search for it using Google.

First, type into Google something along the lines of, “Chronic Fatigue Syndrome Support Group [Name of Your Town].”

sccenshot of search results for local support group

If the search result doesn’t display a support group in your town, try the Google search for the town next to you, or the next bigger town.

Using this method, I discovered that even my small city has a support group for CFS/ME, a fact that none of the other ways of finding a support group accounted for.

The not-so-obvious (but exciting) support group

Two important benefits I was looking to get from joining a support group were, first, having my needs met for deep interpersonal heart-to-heart connection and, second, a sense of not being alone in my suffering.

Suffering may be a strong word here, but it’s not when it’s related to the not-so-obvious support group that I found. This group was actually a Buddhist meditation group, and, as you may already know, Buddhists are really into acknowledging their suffering (first noble truth) and overcoming that suffering (second noble truth).

Attending this group helped me realize that, although I was the only group member with CFS, I was not the only person suffering. A mother suffers because her sons are smoking more weed than they should—or at least than she’d like—and another woman suffers because taking care of her dying mother brings up difficult ”stuff” from her childhood.

Although the suffering of my peers was not caused by CFS, their facing their own suffering, gave me strength and motivation to face my CFS-induced symptoms and hard-to-deal-with emotions. Seeing other people suffer made me aware that suffering is a human condition and that CFS is just my path for learning how to transform that suffering.

This meditation group, which practices meditation in the tradition of renowned Zen master Thich Nhat Hanh, also helped me fill my need for heart-to-heart connection. In one of our practices called “dharma sharing” each person in the circle speaks about what’s in their heart while everyone else listens deeply to their words. One week I might share about how much I enjoy the spring in Davis; another time I might share that despite doing my best, my week was just tough.

This kind of deep, personal sharing creates a profound sense of connection between the members in the group, because we learn about what’s important in each other’s lives, what brings us joy, and what we’re struggling with. We also share freely about what we appreciate in each other.

But what if you can’t meditate or sit in a chair?

All the meditation groups I’ve attended so far have been very accommodating to my special needs. For example, although everyone else meditates silently, I listen on earphones to my guided meditation from the Gupta Programme to keep my mind focused. While everyone else is sitting on a pillow, I lie down flat on my back, or sit in a chair. I believe that you, too, will be welcomed by your meditation group.

How to tell if a support group is right for you

You will know if a support group is right for you by noticing its impact on you.

Do you feel empowered and uplifted after a meeting? Did attending the meeting fill any of your needs for connection, community, and learning about CFS-resources in your area?

Did the meeting drain your limited emotional and physical energy? Did you not feel a sense of connection with the people in the group?

As you try out a couple of groups, the answers to these questions will emerge in your mind, and you’ll get a better sense for what support groups can do for you.

Actions you can take immediately

  1. Find out out about support groups in your area using a search engine or contacting the CFIDS Association.
  2. Schedule two meetings with a support group or two different support groups in your calendar.
  3. Consider if you want to attend a not-so-obvious support group. Do you know a group where people share from their heart? You might find it at your church, in a speaking circle (California only), or in one of the meditation groups in the tradition of teacher Thich Nhat Hanh.

I wish you good luck with finding a group that you can turn to for support on your recovery journey!

Over to you

What are your experiences with and questions about support groups? Share them by leaving a comment below this post!

This article is also part of a comprehensive free e-course that I’m teaching on the fundamentals of regaining your health and happiness. To learn more about the course and sign up for free, click here.

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