2002 study that doesn't seem to have been cited very many times, most likely because of the journal it was published in, which was not PubMed-listed. https://www.tandfonline.com/doi/abs/10.1300/J092v10n01_03 Journal Journal of Chronic Fatigue Syndrome Volume 10, 2002 - Issue 1 Original Article Quality of Life of Patients with Chronic Fatigue Syndrome Guus L. Van Heck &Jolanda De Vries Pages 17-35 | Published online: 04 Dec 2011 https://doi.org/10.1300/J092v10n01_03 Abstract The purpose of this study was to compare quality of life between patients with Chronic Fatigue Syndrome (CFS; n = 73) and healthy controls (n = 147), using a broad and generic quality of life assessment instrument, the World Health Organization Quality of Life assessment (WHOQOL-100). Participants were assessed on the WHOQOL-100, a self-assessment instrument designed for quantifying 24 facets relating to quality of life. These facets are grouped into six larger domains: physical health, psychological health, level of independence, social relationships, environment, and spirituality. The WHOQOL-100 also includes one facet examining overall quality of life and general health perceptions. Analyses revealed that the CFS group reported significantly lower levels of quality of life than the control group on overall quality of life and general health perceptions and on 22 out of the 24 facets of quality of life. Compared to earlier studies that used health-status scales or rather limited quality of life measures, this study generated a more complete picture of the problems of patients with CFS. The results suggest that the impact of CFS on the patients' lives is very profound. CFS has a quality-of-life burden that affects a wide range of factors inherent to quality of life. Questions that must be addressed by future research are considered.
Until it’s recognised that contrary to the bps narrative CFS is often not “reversible through our own efforts”, then QAL studies can’t make the impact. Pointing out many function lower than MS or heart disease is ineffective if the general belief is , so what you get better, they don’t. Ofcourse some pwME can do well and some stay mild, but if the rest are expected to slowly recover or do rehab, being knocked out in bed even is irrelevant if, like the DOH minister, you believe that’s just for a few weeks.
