Voice of the patient: people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share in their own words, 2024, Unger

https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2444826

Research Article
Voice of the patient: people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share in their own words
Dana J. Brimmer
Jin-Mann S. Lin
&
Elizabeth R. Unger
Received 12 Sep 2024, Accepted 23 Oct 2024, Published online: 01 Jan 2025

ABSTRACT

Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective
We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods
We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results
Over four years, eight VOP stories were completed and posted on CDC's ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions
Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

 

Bizarre to make a paper out of this. A paper that says nothing and could have been an email. About doing 8 interviews in 4 years.

Pointless to anyone but them and adds nothing, but, hey, it's an easy paper, I guess.

 

Perhaps this is to justify the existence of CDC's ME work?
I mean, it's not as though anyone else has used the voice of the patient to help drive understanding of illnesses... Right?

 

The subject of this post piqued my interest, to see how awful a piece it was and I wasn't disappointed.

It has demonstrated that they can, over a period of time, ask some questions of some people with ME and write down some answers. Well done them. Big round of applause, pat yourselves on the back.

Unless I'm missing something?

 

$5M/year.

It's not doing much else, might as well serve to pad up a few academics' career.

 

ME Research UK:

ME/CFS is a serious, complex, and often misunderstood, disease with symptoms including post-exertional malaise, pain, unrefreshing sleep, and brain fog. Importantly, different people experience different combinations of these symptoms, and they can also vary in severity between individuals – and within the same individual over time, meaning that the disease – and the experience of living with it, is very diverse.

Dr Dana Brimmer and colleagues recognised the diversity of the disease, and noted that many people with ME/CFS “often feel misunderstood and report facing barriers to healthcare utilization”.

To explore the lived experiences of ME/CFS, the research team developed a study – published in the journal “Fatigue: Biomedicine, Health & Behaviour, which used methods that “prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS”.

Read more about the study, and what the researchers concluded here: https://bit.ly/4g5IUe5

Additionally, you can read the stories shared by people with ME/CFS in this study on the Centres for Disease Control website here: https://bit.ly/40GP5Rq