Using X posts to assess the thoughts and experiences of people with ME/CFS.

The thoughts and experiences – such as those shared in public social media postings – of people with a disease are an invaluable source of information for guiding research.

Therefore, a research team at McMaster University in Canada set out to explore posts on Twitter – rebranded as X – to understand the concerns and priorities of people with ME/CFS, with a focus on:

• The COVID-19 pandemic
• Publication of the 2021 NICE guidelines for the diagnosis and management of ME/CFS

What did the researchers do?

The researchers collected public “tweets” (posts on X) relating to ME/CFS posted between 1^st of January 2010, and the 30th of January 2024.

Relevant posts were identified using the search terms “me/cfs”, “myalgic encephalomyelitis/chronic fatigue syndrome”, “myalgic encephalomyelitis”, and “chronic fatigue syndrome.” The researchers excluded non-English tweets and retweets.

Following this, complex methods were used to categorise the general feeling (sentiment) of posts into positive, negative, or neutral, and to identify key themes. Importantly, the research themes excluded the search terms used to identify relevant posts.

What did the study find?

Overall, 906,404 posts were identified, and sorted into three chronological periods:

1. “Pre-COVID-19 pandemic”: 570,723 posts (63% of all posts) posted between the 1^st of January 2010 and the 11^th of December 2019.  
2. “Post-COVID-19 pandemic”: 139,486 posts (15% of all posts) posted between the 12^th of December 2019 and the 27^th of October 2021.
3. “Post-UK 2021 NICE guidelines publication”: 196,195 posts (22% of all posts) posted between the 28^th of October 2021 and the 30^th of January 2024.

When considering the sentiment of the posts, 47% (427,824) were neutral, 41% (369,371) were negative, and 12% (109, 209) were positive. Notably, the proportion of positive and negative posts increased over time, while the proportion neutral posts decreased.

Themes identified were fibromyalgia, treatment, research, the NICE guidelines, COVID-19.

 Posts mentioning fibromyalgia acknowledged:

• Similarities with ME/CFS.
• Stigmatisation associated both ME/CFS and fibromyalgia.
• Lack of effective treatments.

Posts concerning treatment:

• Expressed frustration with the lack of knowledge amongst clinicians, and stressed that “physicians typically lacked sufficient knowledge and experience to handle the complex, multifaceted symptomology associated with ME/CFS”.
• Highlighted the misdiagnosis of ME/CFS as depression or anxiety, and dismissal of concerns relation to ME/CFS.
• Focused on the need for people with ME/CFS to advocate for themselves to find a “good physician” – some X users even reported withholding their ME/CFS diagnosis from their physicians to receive adequate care.

Posts relating to research:

• Praised research relating to biomarkers and biomedical therapies.
• Called for greater investment in biomedical research.
• Expressed frustration with studies relating to graded exercise therapy (GET) or psychological management of ME/CFS, and with those suggesting that ME/CFS may have a biopsychosocial cause.

Posts relating to the NICE guidelines:

• Expressed frustration with the 2007 version of the guidelines for diagnosis and management of ME/CFS that recommended GET and cognitive behavioural therapy and identified a campaign from advocacy organisations to influence subsequent versions of the guideline.
• Showed high acceptance of the 2021 ME/CFS guidelines, which were seen to advise against GET, and validate ME/CFS as a biological disease.

Posts relating to COVID-19 noted similarities between ME/CFS and “post-COVID-19 condition” including:

• Overlaps in symptoms.  
• Claims of a common biological pathway.
• Identification that there was no cure for either.

What are the limitations of the study?

Although this study used a large amount of data – almost 1 million X posts (previously called tweets) were analysed – the authors recognise several limitations including:

• The search terms used may not have identified all posts relating to ME/CFS.
• The complex method used to analyse the posts may misinterpret sarcasm.
• People may use different words when discussing the same subject, for example, due to differences in dialect by geological location.

What do the findings mean?

Results from this study highlight the views and opinions of people with lived of ME/CFS shared on X. Unsurprisingly, the findings draw attention to the lack of knowledge among physicians relating to ME/CFS, misdiagnosis of the disease as psychological in nature, and dismissal of concerns of those with the disease.

While the authors of the article conclude by focusing on the need to educate people with ME/CFS about the availability of “evidence-based treatments” for managing the disease – such as CBT, ME Research UK notes that what is more urgently required is better education for medical professionals about the complex biological nature of the disease, and more large scale investment into biomedical ME/CFS research.