Dolphin
Senior Member (Voting Rights)
OSF
“Don’t confuse your tired with my fatigue”: A content analysis of TikTok media relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID
Grace Johnstone
1
, Gareth J. Treharne
1
, Stefana Huma
1
, Katelyn Wallbank
1
, Emily Koller
1
,
Amanda E. Clifford
1
, Andre Mason
2
1
Department of Psychology, Ōtākou Whakaihu Waka – the University of Otago, Dunedin,
Aotearoa New Zealand
2
School of Psychological and Social Sciences, Te Whare Wānanga o Waikato – the University of
Waikato, Hamilton, Aotearoa New Zealand
Corresponding Author: Andre Mason, School of Psychological and Social Sciences, University
of Waikato, Private Bag 3105, Hamilton 3240, Aotearoa New Zealand. Email:
andre.mason@waikato.ac.nz
Abstract
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID are invisible fatigue-related conditions that face widespread misunderstanding and stigma.
The social media platform TikTok has emerged as a space where individuals share personal experiences about various health conditions, and content about ME/CFS and Long COVID may play an important role in informing about these conditions and challenging common misconceptions.
The aim of the present study was to determine prevalent aspects of media on TikTok related to ME/CFS and Long COVID.
Hashtag sampling was used to extract 500 videos about ME/CFS and Long COVID, and after exclusions, we analysed 103 videos relating to ME/CFS and 95 related to Long COVID.
Content analysis resulted in three themes:
(1) Sharing One’s Journey (using content to share one’s personal experiences with these conditions),
(2) Unveiling the Truth Behind One’s Experiences (using content to address barriers to treatment and support),
and
(3) Navigating Social Connectedness (using content to speak to the importance of having meaningful relationships and supportive communities).
TikTok content related to ME/CFS and Long COVID was largely intended to be informative, with most videos discussing symptom management, diagnostic delays, medical gaslighting, daily challenges, and common misunderstandings.
TikTok was found to serve as platform for content creators to build a community through shared experiences and advocate for understanding the realities of living with an invisible chronic health condition.
The findings inform understandings of TikTok as a platform for sharing health experiences relating to ME/CFS and Long COVID with implications for cyberpsychology research and health literacy.
Keywords: TikTok; Myalgic Encephalomyelitis; Long COVID; Fatigue