Frustrated, but Motivated: Insights from People with ME/CFS, 2025, Rathmann, Jason et al

[forestglip]

Frustrated, but Motivated: Insights from People with ME/CFS

Aiden Rathmann, Suvetha Ravichandran, Leonard A. Jason

[Line breaks added]

Abstract
Qualitative research can amplify and clarify the perspectives of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The current study analyzed responses to an open-ended survey question regarding the experiences of people with ME/CFS, especially in relation to ME/CFS case definitions.

Although many people with ME/CFS are frustrated with their interactions with healthcare workers and researchers, people with this illness want these individuals to listen to them about their experiences with health care and research.

PDF (DePaul University, DePaul Discoveries) [Open Access]

 

[Utsikt]

It’s nice to see a qualitative study that simply reports what was being said without trying to force everything into their pet framework.

I’m not sure how much value something like this adds, other than documenting the reality. It might have some use for PPI purposes by displaying that the single patient that wants strict criteria isn’t actually alone in thinking so. Not sure it would change anything if the people in charge don’t know how to do research, but that’s a different matter.

 

[Sean]

I’m not sure how much value something like this adds, other than documenting the reality.

In that alone it is a clear improvement on most papers, which more typically document and promote the authors' interpretations and prejudices more than anything else.

 

[hotblack]

In that alone it is a clear improvement on most papers, which more typically document and promote the authors' interpretations and prejudices more than anything else.

Definitely. And that alone could be really useful. I know this forum has helped me be more confident and sure of myself. Having published literature back it up is useful.

It’s so easy to be isolated and think you must be the only one thinking or wanting xyz, especially with such an isolating condition and faced with a world which seems to often see the condition differently from those who have it.