Social Media Connectedness in Fibromyalgia

July 15, 2026 updated by: Albert Einstein College of Medicine

Connectedness Via Social Media in Fibromyalgia Patients

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.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Detailed Description

Fibromyalgia is a chronically complex disease of unknown etiology defined by extensive vague musculoskeletal pain, modestly effective treatments, and strong association with psychiatric disorders such as depression and anxiety. Due to the nebulousness of fibromyalgia that engenders stigma and invalidation, psychiatrically related symptoms of hopelessness and loneliness are prevalent among patients suffering from it. These symptoms in turn can worsen outcomes and make this population vulnerable to suicidal ideation. Social support has been shown to improve physical and mental well-being in patients with fibromyalgia. Given that the primary purpose of social media is to promote social support, there has been increasing interest in harnessing social media as a therapeutic intervention. However, evidence for the therapeutic benefit of social media, particularly for loneliness mitigation and suicide prevention, is mixed. In the limited literature about fibromyalgia patients specifically, use of existing social media networks, such as Facebook and Instagram, has been shown to improve pain and depressive symptoms. The benefit of social media appears to derive from a sense of connectedness via (1) developing a sense of community among individuals with common experiences and (2) exchanging experiences, information, and support. Given the lack of research around the use of social media in fibromyalgia patients, this study aims to investigate whether social media tailored to fibromyalgia patients can improve physical and mental health. Specifically, participants were randomized to conditions of differing social media engagement (i.e. passively consuming information [TAU] vs. receiving specific user-generated content evaluated to be validating and supportive [e-TAU] vs. receiving this helpful content while participating in a support group [e-TAU+G]) to delineate how different aspects social media use contribute to connectedness and improved outcomes. This study is needed, as fibromyalgia patients are a group that would benefit most from an easily accessible and affordable modality that can bolster social support.

This study constitutes analysis of data collected by themighty.com. Themighty.com is a social media platform dedicated to promoting health and well-being. The platform features stories reflecting lived experience with physical and mental health challenges. In addition, themighty.com offers a peer-to-peer forum for users to solicit and receive support. From January to October 2023, themighty.com collected data to evaluate users' engagement with and benefits of their platform. The study collected data using a randomized control design (three arms) over an 18-week period before crossover. Participants were randomized using simple randomization. Condition assignment was not blinded. However, a cross-over strategy was employed, wherein participants originally assigned to the TAU condition were then allocated to the e-TAU+G condition after the initial 18-week trial.

This study's hypothesis is that the e-TAU+G arm would show greatest improvements in outcomes, followed by the e-TAU arm, with the TAU arm showing the least improvement.

Study Type

Observational

Enrollment (Actual)

1041

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • New York
      • The Bronx, New York, United States, 10461
        • Albert Einstein College of Medicine

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Probability Sample

Study Population

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

Description

Inclusion Criteria:

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

Exclusion Criteria:

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Treatment as usual (TAU)
Participants used the platform as usual (e.g., log in, read stories).
Behavioral: Social Media
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.
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
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.
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
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Perceived Shared Experiences
Time Frame: Weeks 6, 12, and 18
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
Time Frame: Weeks 6, 12, and 18
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
Time Frame: Weeks 6, 12, and 18
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 Outcome Measures

Outcome Measure
Measure Description
Time Frame
Suicidal Ideation
Time Frame: Weeks 6, 12, and 18
Suicidal ideation was assessed via online survey by asking participants the question, "In the past week, how often did you have thoughts of not wanting to be alive or of hurting yourself in some way?" Participants provided responses using a 7-item Likert scale ranging from 1 ("I didn't have these thoughts at all") to 7 ("Every day"), such that higher scores were indicative of increased thoughts of suicidal ideation and lower scores were indicative of decreased thoughts of suicidal ideation. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Depression
Time Frame: Weeks 6, 12, and 18
Depression was assessed using the 9-item Patient Health Questionnaire (PHQ-9). The PHQ-9 is a standard measurement tool used for screening, diagnosing, monitoring and measuring the severity of depression. Participants were asked how often they had been bothered by symptoms like depressed mood, trouble sleeping, or low energy over the past two weeks. Each question is scored on a 4-point scale ranging from 0 ("Not at all") to 3 ("Nearly every day"), for an overall possible scoring range of 0-27, such that higher scores were indicative of increased depressive symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Anxiety
Time Frame: Weeks 6, 12, and 18
Anxiety was assessed using the 7-item Generalized Anxiety Disorder-7 (GAD-7) scale. The GAD-7 is a self-assessment tool used to screen for and asses the severity of anxiety. Participants were asked how often they had been bothered by common symptoms of anxiety over the prior two week period. Each question is scored on a 4-point scale ranging from 0 ("Not at all") to 3 ("Nearly every day"), for an overall possible scoring range of 0-21, such that higher scores were indicative of increased anxiety symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Functional Impairment
Time Frame: Weeks 6, 12, and 18
Functional impairment was assessed via online survey by asking participants the question, "In the past week, how often did your fibromyalgia symptoms get in the way of your goals?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all") to 7 ("Every day"), such that higher scores were indicative of increased functional impairment and lower scores were indicative of decreased functional impairment. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18

Other Outcome Measures

Outcome Measure
Measure Description
Time Frame
Perceived Burdensomeness and Thwarted Belongingness
Time Frame: Administered weeks 6, 12, and 18
Perceived burdensomeness and Thwarted belongingness were assessed using the 15-item Interpersonal Needs Questionnaire (INQ-15). The INQ-15 is a widely used clinical assessment tool designed to evaluate two psychological constructs linked to suicide ideation: perceived burden and thwarted belonging. Perceived burdensomeness subscale items (questions 1-6) were rated on a scale ranging from 1 ("Not at all true") to 7 ("Very true"), yielding a range of 6-42. Thwarted belongingness subscale items (questions 7-15) were rated on a scale ranging from 1 ("Not at all true") to 7 ("Very true"), yielding a range of 9-63. A total perceive burden score was calculated by combining the two subscales, yielding an overall scoring range of 15-99, such that higher scores are indicative of increased perceived burden and thwarted belonging. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Administered weeks 6, 12, and 18
Post-Traumatic Stress Disorder (PTSD)
Time Frame: Administered weeks 6, 12, and 18.
PTSD was assessed using the Short PTSD Rating Interview (SPRINT). SPRINT is an 8-item clinical assessment tool designed to quickly evaluate the core symptoms and severity of PTSD (intrusion, avoidance, numbing, arousal) along with somatic malaise, stress vulnerability, and role and social functional impairment. Participants provide responses to each of the 8 items based on their experiences over the past week using a 5-point scale ranging from 0 ("Not at all") to 4 ("Very much"), for an overall possible score of 0-32, such that higher scores are indicative of increased severity of PTSD symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Administered weeks 6, 12, and 18.

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Albert Einstein College of Medicine

Investigators

  • Principal Investigator: Peter Franz, PhD, Albert Einstein College of Medicine

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

January 19, 2023

Primary Completion (Actual)

October 31, 2023

Study Completion (Actual)

October 31, 2023

Study Registration Dates

First Submitted

July 15, 2026

First Submitted That Met QC Criteria

July 15, 2026

First Posted (Actual)

July 21, 2026

Study Record Updates

Last Update Posted (Actual)

July 21, 2026

Last Update Submitted That Met QC Criteria

July 15, 2026

Last Verified

July 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 2024-16294

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

UNDECIDED

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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