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Fibromyalgia (FM)NCT07715877

Social Media Connectedness in Fibromyalgia

An observational study of Fibromyalgia (FM) and Social Connection, run by Albert Einstein College of Medicine at 1 site in United States.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial 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. Read more about this study

Who is it for?
Ages 18 years and older
What is being tested?
Social Media
How many people
1,041 participants
Where
1 siteUnited States
Study dates
19 Jan 2023to 31 Oct 2023
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

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

Who may be able to join

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

Who cannot join

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

Trial locations and contacts

1 site in 1 country.

United States1 site
  • Albert Einstein College of Medicine

    The Bronx, New York, 10461

Other trials in United States

About this study

Official title: 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.

Read the 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.

Being tested
Social Media
Keywords
social media, depression, suicide, fibromyalgia
Medical subject headings
Fibromyalgia, Suicidal Ideation, Depression, Suicide

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Social MediaBehavioural

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

Study groups in NCT07715877
Study groupRoleWhat they receive
Treatment as usual (TAU)Participants used the platform as usual (e.g., log in, read stories).
Receives: 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.
Receives: 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.
Receives: Behavioral: Social Media

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. 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.

    Measured: Weeks 6, 12, and 18

  2. 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.

    Measured: Weeks 6, 12, and 18

  3. 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.

    Measured: Weeks 6, 12, and 18

Secondary outcomes (4)
  1. Suicidal Ideation

    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.

    Measured: Weeks 6, 12, and 18

  2. Depression

    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.

    Measured: Weeks 6, 12, and 18

  3. Anxiety

    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.

    Measured: Weeks 6, 12, and 18

  4. Functional Impairment

    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.

    Measured: Weeks 6, 12, and 18

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted21 Jul 2026
  2. Study start19 Jan 2023
  3. Primary completion31 Oct 2023
  4. Study completion31 Oct 2023

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Case crossover
Time perspective
Prospective
Enrolment
1,041 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT07715877
Sponsor's protocol ID
2024-16294
Status last verified
Jul 2026
First submitted
15 Jul 2026
Last updated
21 Jul 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
Undecided

Publications

  • 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.

    PubMed 33383293
  • 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.

    PubMed 30699852
  • 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.

    PubMed 22303622
  • 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.

    PubMed 33396651
  • 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.

    PubMed 23957903
  • 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.

    PubMed 25180546
  • 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.

    PubMed 34886527
  • 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

  • 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.

    PubMed 25702826
  • 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.

    PubMed 30066603
  • 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.

    PubMed 36096353
  • 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.

    PubMed 33238467

Questions about this trial

What is this clinical trial studying?

An observational study of Fibromyalgia (FM) and Social Connection, run by Albert Einstein College of Medicine at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 4 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 21 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Perceived Shared Experiences (time frame: Weeks 6, 12, and 18). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT07715877, which also lists 12 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 21 Jul 2026.

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