Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey (Morehouse et al., 2021)

[Pyrrhus]

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey (Morehouse et al., 2021)
https://www.tandfonline.com/doi/abs/10.1080/21641846.2021.1950406

"Positive experiences [to online support groups] included a sense of belonging, validation, supportive friendships and feelings of positively impacting others."

"Negative experiences [to online support groups] included jealousy, decreased hope and optimism and disagreement regarding treatment strategies."

Excerpt:

Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5].

Purpose
To examine the perceived impacts of participation in online support groups on depression, anxiety and quality of life among people with ME/CFS.

Results
Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies.

Conclusion
Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience.

 

[Judee]

So far I think support groups like this help. I know sometimes we each other but mostly, I feel like we care.

The only thing that drives me bananas (okay so no banana emojis) is when someone joins the group and starts the..."I got better easy-peasy" song and dance.

 

[Rufous McKinney]

So far I think support groups like this help. I know sometimes we each other but mostly, I feel like we care

I was pitching our form of supportive chatroom- to a friend just yesterday. Her adult daughter has no friends, no contact and will not participate in social media. She has some developmental challenges, etc. She might be on the spectrum. I'd love to help her find some contacts.

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[Pyrrhus]

Here is a message from the authors, posted on social media:

Big update!

Today, our graduate student research study was published in a real live journal! Our article is entitled: Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME.

A topic that has been near and dear to our hearts for the past 1.5 years while conducting our research, myalgic encephalomyelitis is a debilitating condition characterized by persistent fatigue, often exacerbated by physical or mental effort. Other symptoms include joint pain, reduced memory/concentration, a compromised immune system, and sleep disturbances which persist throughout the course of individuals’ lives. Unfortunately, the etiology of ME is poorly understood and there is no cure for the condition.

We were fortunate to have many passionate participants in our study willing to share their experiences with us in hopes to raise awareness and contribute to the limited research available regarding ME.
[...]
Also, a huge thank you to our faculty research advisors Dr. Herlache-Pretzer and Dr. Webster for all of their guidance and support throughout this process.