Trial Report Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS, 2024, Muirhead

https://www.mdpi.com/1648-9144/60/8/1215

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS

Medicina 2024, 60(8), 1215; https://doi.org/10.3390/medicina60081215 (registering DOI)
Submission received: 31 May 2024 / Revised: 4 July 2024 / Accepted: 16 July 2024 / Published: 27 July 2024

(This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care: Part II)


Abstract

Background and Objectives:

We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey.

Materials and Methods:

A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L).

Results:

Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18–82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%).

Conclusions:

The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities.

Keywords:
myalgic encephalomyelitis; chronic fatigue syndrome; quality of life

 

I apologise for being technically clumsy.
14 years to diagnose ME/CFS is where medical neglect starts.

Doctors are supposed to be smart people, but I've become less and less convinced about that.
Medical training means pumping lots of knowledge into the doctors heads, but they are supposed to be more than just copy-machines.

Think and rethink. Keep learning what's new and unlearning what's wrong.
We all might benefit.

 

They don't seem to report this in the abstract but the mean EQ-5D score was 0.38 for ME/CFS patients (the mean of the UK population is 0.86).

 

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

Just placing the 2015 article here (has the often used chart comparing different diseases)

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
Michael Falk Hvidberg, Louise Schouborg Brinth,Anne V. Olesen, Karin D. Petersen, Lars Ehler

Sorry dont know how to link a thread to this: I assume there is one.

 

There might not be one, because the article (which would have attracted discussion) predates the forum.

 

Looks like they reported a mean EQ-5D 3L score of 0.47 for ME/CFS (the lowest of all diseases). But if I understand correctly, the one reported by Muirhead et al. is even lower with a mean 0.38.

 

I added it as The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) (2015, PLOS ONE)