On recognising "the disabling effects of ME/CFS"

The findings reported by Caroline Kingdon and colleagues [1] observing that "Using SF-36v2™ scores as a proxy, people with ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] were measurably more disabled than PWMS [people with multiple sclerosis] or HCs [healthy controls] in this study population" didn't really surprise me.

Although I'm always a little cautious about making sweeping 'who's the more disabled' comparisons when it comes to various diseases / conditions / labels, I've previously talked about how truly quality-of-life-sapping a diagnosis of ME/CFS can be (see here). Indeed, from previous results published by Falk Hvidberg and colleagues [2] for example, the message was pretty clear: "The ME/CFS study population is more disabled and socially marginalized than the average population with regards to the subjects of long-term illness, number of illnesses, proportion of disability pensioners and relationships." Indeed on that research occasion, ME/CFS beat the likes of lung cancer, depression and schizophrenia in terms of measured severity of health-related quality of life.

The Kingdon results add to such sentiments; on this occasion comparing the "impact of disability" associated with ME/CFS with reports from PWMS and asymptomatic (so-called 'healthy') controls. Multiple sclerosis (MS) by the way, refers to an autoimmune condition that affects many different parts of the body "including problems with vision, arm or leg movement, sensation or balance."

The results, based on data "collected as part of the UK ME/CFS Biobank" included reports from over 50 people diagnosed with ME/CFS and similar numbers diagnosed with MS or asymptomatic. We are told that the SF-36v2™ is an instrument that "uses 36 questions to collect information about functional status and well-being from respondents" and covers various domains.

One figure in particular (see here) provides a good visual representation of how disabling ME/CFS was on this [group] study occasion. Median scores from participants with ME/CFS were 'consistently below' scores from the other groups on every domain, indicative of greater disability. I should also note that despite median [group] scores on the mental health domain also being lower for the ME/CFS group than the comparators, they were at least 'nearer' to the other groups than scores on the other domains examined. I say this in the context that mental health is almost certain to be affected by a diagnosis of ME/CFS, but does not need any psychobabble (i.e. psychosomatic / biopsychosocial) explanations thank you very much (see here).

There are a couple of other important trends noted in the Kingdon data worth noting. So: "Disease onset had a greater impact on employment among people with ME/CFS than among PWMS" and "Post disease onset, 83% of people with ME/CFS earned below £20,000, compared with 59% of PWMS and 54% of HCs." ME/CFS it seems, is not only a condition that hits people hard in a physical sense, it also represents an important route to financial hardship too. Further: "Unemployment costs are borne by both the individual and society." So not only does it make good sense to cure ME/CFS (yes, that's cure as in complete recovery) for the people concerned, but society also benefits. I'm also minded to suggest that when and where people with ME/CFS are disabled to such an extent by their symptoms, we (society) owe it to them to ensure that they are properly supported both medically and also, financially (see here).

Any questions?

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[1] Kingdon CC. et al. Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls. PharmacoEconomics. 2018. March 13.

[2] Falk Hvidberg M. et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421.

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