BMJ: Impact of ME/CFS on the quality of life of people with ME/CFS and their partners and family members.... Vyas, Muirhead et al, 2022

Full title:
Impact of myalgic encephalomyelitis/chronic fatigue syndrome /ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey
Jui Vyas, Nina Muirhead et al

Abstract
Objectives The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).

Design A patient-partner, multinational, subject-initiated, cross-sectional online survey.

Setting International survey using ME/CFS charities, support groups and social media.

Participants Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.

Interventions EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.

Results The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.

Conclusions To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.

 

Spotted the paper on twitter in this tweet from Dr Asad Khan who comments:

Quoting Dr Nina Muirhead: patients with #MECFS in this paper have avg 14 years of being ill and a massive negative impact on QoL of #pwME & family members -that would be another million people if they don’t solve #LongCovid & postviral disease

 

A very respectable sample.

What I think is new (in a large survey) is the data on the scale of impact on family members: 18/32 (0-32 scale, 32 is worst). There is a moderate-to-strong correlation between the severity of illness and the impact on the family member (0.35 with VAS severity, 0.41 with EQD5).

 

also those who do not have any survival capability due to lack of services. survival needs not met. i am facing this.

that is, nobody able or willing to help if any and no government services that help.

also children whose family, doctors, peers, teachers do not treat them as sick. [edit: this was my case as child.]

 

ME/CFS Clinical Tool – Measuring Family Quality of Life Impact

full write up
https://doctorswith.me/familyqoltool/

 

The FROM-16 questionnaire itself is available here, https://www.cardiff.ac.uk/medicine/...uestionnaires/family-reported-outcome-measure

 

Honestly it's not great. Way too many questions about emotional states, I don't understand the point of this entire section.

The questions are too superficial and have too many possible interpretations, not practical enough.

I don't consider that questionnaire useful. Disappointing.