Social Media Connectedness in Fibromyalgia

NCT07715877 | Completed

• 1 other identifier: 2024-16294
• Study Type: observational
• Target: 1,041
• Locations: 1 country
• Sites: 1

Brief Summary

Patients suffering from fibromyalgia commonly experience depressive symptoms such as loneliness and hopelessness due to the nebulousness of the disease. A primary purpose of social media is to promote connectedness, which is associated with improved well-being. Using archival, de-identified data collected by a social media company, this study aims to explore whether connectedness among patients with fibromyalgia facilitated by social media can improve mental and physical health outcomes.

Conditions

Fibromyalgia (FM); Social Connection; Suicidal Thoughts

Keywords

social media; depression; suicide; fibromyalgia

Outcome Measures

Primary Outcomes (3)

• Perceived Shared Experiences

  Perceived shared experiences were assessed via online survey by asking participants the question, "In the past week, how much did you feel like you are not the only person living with your struggles?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Definitely not the only one") to 7 ("Completely the only one"), such that lower scores were indicative of an increased sense of shared experiences and higher scores were indicative of a decreased sense of shared experiences. This survey was administered weekly during the trial.

  Weeks 6, 12, and 18

• Hopefulness/Hopelessness

  Hopefulness and hopelessness were assessed via online survey by asking participants the question, "In the past week, how much do you feel like the problems you are currently facing might get better in the future?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all") to 7 ("Definitely"), such that higher scores were indicative of increased feelings of hopefulness and lower scores were indicative of increased feelings of hopelessness. This survey was administered weekly during the trial.

  Weeks 6, 12, and 18

• Validation and Understanding

  Validation and feelings of being understood were assessed via online survey by asking participants the question, "In the past week, how understood did you feel by others?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all understood") to 7 ("Definitely understood"), such that higher scores were indicative of increased feelings of validation and understanding and lower scores were indicative of decreased feelings of validation and understanding. This survey was administered weekly during the trial.

  Weeks 6, 12, and 18

Secondary Outcomes (4)

• Suicidal Ideation

  Weeks 6, 12, and 18

• Depression

  Weeks 6, 12, and 18

• Anxiety

  Weeks 6, 12, and 18

• Functional Impairment

  Weeks 6, 12, and 18

Other Outcomes (2)

• Perceived Burdensomeness and Thwarted Belongingness

  Administered weeks 6, 12, and 18

• Post-Traumatic Stress Disorder (PTSD)

  Administered weeks 6, 12, and 18.

Study Arms (3)

Treatment as usual (TAU)

Participants used the platform as usual (e.g., log in, read stories).

Behavioral: Social Media

Enhanced TAU (e-TAU)

Participants received specialized emails from the platform containing user-generated stories featuring lived experience with fibromyalgia that were identified as helpful for increasing social connectedness/support and hope, in addition to typical platform use.

Behavioral: Social Media

Enhanced TAU + group (e-TAU+G)

In addition to receiving the specialized emails with supportive narratives, participants were invited to join a closed group of other people with fibromyalgia that would facilitate communication amongst members.

Behavioral: Social Media

Interventions

Social Media BEHAVIORAL

Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.

Enhanced TAU (e-TAU); Enhanced TAU + group (e-TAU+G); Treatment as usual (TAU)

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

Study participants were adults who can regularly access/use social media, who were recruited via online advertisements.

You may qualify if:

• years of age or older
• Can read and write English proficiently
• Live in the USA
• Carry a diagnosis of fibromyalgia

You may not qualify if:

• Younger than 18-years-old
• Cannot read or write English proficiently
• Does not live in the U.S.
• Does not carry fibromyalgia diagnosis

Sponsors & Collaborators

• Albert Einstein College of Medicine: lead

Study Sites (1)

Albert Einstein College of Medicine

The Bronx, New York, 10461, United States

Location

Related Publications (12)

• Kleykamp BA, Ferguson MC, McNicol E, Bixho I, Arnold LM, Edwards RR, Fillingim R, Grol-Prokopczyk H, Turk DC, Dworkin RH. The Prevalence of Psychiatric and Chronic Pain Comorbidities in Fibromyalgia: an ACTTION systematic review. Semin Arthritis Rheum. 2021 Feb;51(1):166-174. doi: 10.1016/j.semarthrit.2020.10.006. Epub 2020 Dec 29.

  PMID: 33383293 BACKGROUND

• Loge-Hagen JS, Saele A, Juhl C, Bech P, Stenager E, Mellentin AI. Prevalence of depressive disorder among patients with fibromyalgia: Systematic review and meta-analysis. J Affect Disord. 2019 Feb 15;245:1098-1105. doi: 10.1016/j.jad.2018.12.001. Epub 2018 Dec 3.

  PMID: 30699852 BACKGROUND

• Kool MB, Geenen R. Loneliness in patients with rheumatic diseases: the significance of invalidation and lack of social support. J Psychol. 2012 Jan-Apr;146(1-2):229-41. doi: 10.1080/00223980.2011.606434.

  PMID: 22303622 BACKGROUND

• Ordonez-Carrasco JL, Sanchez-Castello M, Calandre EP, Cuadrado-Guirado I, Rojas-Tejada AJ. Suicidal Ideation Profiles in Patients with Fibromyalgia Using Transdiagnostic Psychological and Fibromyalgia-Associated Variables. Int J Environ Res Public Health. 2020 Dec 30;18(1):209. doi: 10.3390/ijerph18010209.

  PMID: 33396651 BACKGROUND

• Jaremka LM, Andridge RR, Fagundes CP, Alfano CM, Povoski SP, Lipari AM, Agnese DM, Arnold MW, Farrar WB, Yee LD, Carson WE 3rd, Bekaii-Saab T, Martin EW Jr, Schmidt CR, Kiecolt-Glaser JK. Pain, depression, and fatigue: loneliness as a longitudinal risk factor. Health Psychol. 2014 Sep;33(9):948-57. doi: 10.1037/a0034012. Epub 2013 Aug 19.

  PMID: 23957903 BACKGROUND

• Wolf LD, Davis MC. Loneliness, daily pain, and perceptions of interpersonal events in adults with fibromyalgia. Health Psychol. 2014 Sep;33(9):929-37. doi: 10.1037/hea0000059.

  PMID: 25180546 BACKGROUND

• Reig-Garcia G, Bosch-Farre C, Suner-Soler R, Juvinya-Canal D, Pla-Vila N, Noell-Boix R, Boix-Roqueta E, Mantas-Jimenez S. The Impact of a Peer Social Support Network from the Perspective of Women with Fibromyalgia: A Qualitative Study. Int J Environ Res Public Health. 2021 Dec 4;18(23):12801. doi: 10.3390/ijerph182312801.

  PMID: 34886527 BACKGROUND

• O'Day, E. B., & Heimberg, R. G. (2021). Social media use, social anxiety, and loneliness: A systematic review. Computers in Human Behavior Reports, 3(100070). https://doi.org/10.1016/j.chbr.2021.100070

  BACKGROUND

• Robinson J, Cox G, Bailey E, Hetrick S, Rodrigues M, Fisher S, Herrman H. Social media and suicide prevention: a systematic review. Early Interv Psychiatry. 2016 Apr;10(2):103-21. doi: 10.1111/eip.12229. Epub 2015 Feb 19.

  PMID: 25702826 BACKGROUND

• Berard AA, Smith AP. Post Your Journey: Instagram as a Support Community for People With Fibromyalgia. Qual Health Res. 2019 Jan;29(2):237-247. doi: 10.1177/1049732318789102. Epub 2018 Aug 1.

  PMID: 30066603 BACKGROUND

• Pester BD, Tankha H, Cano A, Tong S, Grekin E, Bruinsma J, Gootee J, Lumley MA. Facing Pain Together: A Randomized Controlled Trial of the Effects of Facebook Support Groups on Adults With Chronic Pain. J Pain. 2022 Dec;23(12):2121-2134. doi: 10.1016/j.jpain.2022.07.013. Epub 2022 Sep 9.

  PMID: 36096353 BACKGROUND

• Cipolletta S, Tomaino SCM, Lo Magno E, Faccio E. Illness Experiences and Attitudes towards Medication in Online Communities for People with Fibromyalgia. Int J Environ Res Public Health. 2020 Nov 23;17(22):8683. doi: 10.3390/ijerph17228683.

  PMID: 33238467 BACKGROUND

MeSH Terms

Conditions

Fibromyalgia; Suicidal Ideation; Depression; Suicide

Interventions

Media Exposure

Condition Hierarchy (Ancestors)

Muscular Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Neuromuscular Diseases; Nervous System Diseases; Self-Injurious Behavior; Behavioral Symptoms; Behavior

Intervention Hierarchy (Ancestors)

Sociology; Social Sciences; Behavioral Sciences; Behavioral Disciplines and Activities

Study Officials

• Peter Franz, PhD

  Albert Einstein College of Medicine

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE CROSSOVER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 15, 2026
• First Posted: July 21, 2026
• Study Start: January 19, 2023
• Primary Completion: October 31, 2023
• Study Completion: October 31, 2023
• Last Updated: July 21, 2026

Record last verified: 2026-07

Locations

US (1)