Tag: patient community

Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME)

Abstract:

Background: To co-produce the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) with patients and clinicians, and to assess its content validity.

Methods: Guided by the COSMIN guidelines, a draft CNAME was devised from relevant literature and lived experience. It was revised following piloting and cognitive interviews with the advisory groups and then completed online by people with ME. Content and face validity were assessed via deductive framework analysis of participants’ feedback. Construct validity (in terms of relevance, duplication and comprehensibility) was assessed using frequencies, cross-tabulations and response rates, respectively. As the CNAME produces dichotomous (yes/no or not relevant) data, which are not summated and are not intended for repeated use, further psychometric analyses are not possible or relevant.

Results: Four hundred people with ME participated. Comprehensibility was excellent (> 97.5% item completion rate). There were no floor effects, but several items had a ceiling effect and were removed. Eight items demonstrated duplication and were combined. Participant feedback was positive, confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete.

Conclusions: The Clinical Needs Assessment for ME is a valid, feasible and acceptable measure of people with ME/CFS’ clinical needs.

Patient and public contribution: Development of the CNAME was a patient-led project (both the authors live with ME/CFS) and it was co-produced by people with ME/CFS and clinicians working in NHS specialist ME/CFS services. People with ME/CFS and clinicians were involved in all stages of the study-conceptualisation, design, conduct, analysis, interpretation and dissemination.

Source: Tyson SF, Fleming R. Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME). Health Expect. 2026 Oct;29(5):e70854. doi: 10.1111/hex.70854. PMID: 42649108; PMCID: PMC13518227. https://pmc.ncbi.nlm.nih.gov/articles/PMC13518227/ (Full text)

Online Health Communities in Controversy over ME/CFS and Long Covid

Abstract:

The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more. Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses. Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature.

While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well. Using a framework for understanding health controversies as argumentative polylogues, I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs’ own goals and in elevating the overall quality of the debate. Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.

Source: Jackson, S. (2023). Online Health Communities in Controversy over ME/CFS and Long Covid. European Journal of Health Communication, 4(2), 49–72. https://doi.org/10.47368/ejhc.2023.203 https://ejhc.org/article/view/3559/2989 (Full text)

“United We Stand”: Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community

Abstract:

In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites.

From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC).

After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

© The Author(s) 2014.

 

Source: Lian OS, Nettleton S. “United We Stand”: Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community. Qual Health Res. 2015 Oct;25(10):1383-94. doi: 10.1177/1049732314562893. Epub 2014 Dec 8. https://www.ncbi.nlm.nih.gov/pubmed/25488934