Health-related quality of life in CFS/ME

Hvidberg et al (2015) PLoS One. e0132421

Two papers are served up for your reading today. Both provide stark peer-reviewed evidence that when it comes to chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME), measures of quality of life (QoL) rank this/these condition(s) as potentially causing great suffering compared with population norms and various other states.

The first paper is by Michael Falk Hvidberg and colleagues [1] (open-access available here) and details response of Danish participants diagnosed with ME/CFS on the EQ-5D-3L "a generic, self-reported questionnaire with five dimensions: 1) mobility; 2) self-care; 3) usual activities; 4) pain/discomfort; and 5) anxiety/depression."

Taking into account various other variables such as gender/sex and education, researchers reported that 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." Further based on the examination of various other data utilising the EQ-5D-3L schedule "the ME/CFS patients of the current study have the lowest, unadjusted EQ-5D-3L measured HRQoL [health-related quality of life] of 20 conditions, thus even worse than multiple sclerosis and stroke." The figure reproduced from the Hvidberg study shows how ME/CFS measures up against those other conditions.

Continuing the theme of of health-related QoL are the results published by Anette Winger and colleagues [2] (open-access available here). Detailing the experiences of some 120 Norwegian adolescents, researchers delivered "The Pediatric Quality of Life Inventory™, 4.0 (PedsQL)" among other things to participants and "39 healthy controls (HC)." They concluded that: "adolescents with CFS have a significantly lower quality of life compared with healthy controls, demonstrated by lower overall HRQOL score and sub-score levels for specific HRQOL domains." Further: "Depressive symptoms were found in both adolescents with CFS and HCs, but the score levels were higher among the adolescents with CFS. The low HRQOL level in the CFS group was not explained by depressive symptoms but by having CFS."

Bearing in mind potential methodological issues such as the relatively small participant numbers included and the reliance on self-report as a measure of QoL (though not necessarily a bad thing when it comes to an individual's perceived quality of life), there are some pretty stark messages to come from this and other peer-reviewed data on this topic.

First and foremost is the idea that a diagnosis of ME/CFS really, really impacts on a person's life. For those suffering (yes, people diagnosed with ME/CFS do suffer) from this disorder, this is not likely to be new news. If you want just one story about how far-reaching the effects of this disorder can be, you can read it here. That a reduction in health-related QoL which follows ME/CFS is likely to be compounded by the 'stigma' built up around the condition(s) should also not be under-estimated. Indeed, only this year (2015) has science really started to put some flesh on the bones that ME/CFS is a 'biological illness' as per the Hornig/Lipkin results (see here) and those from others (see here).

Second, and as per some comment in the Winger results, is the idea that 'school functioning' is an important area that is impacted when it comes to adolescent ME/CFS. To quote: "school functioning was the most affected HRQOL domain, with a score level... substantially lower compared with previous studies on CFS patients." I've covered the idea that ME/CFS might show something of a connection to school attendance before on this blog (see here) and how onset of symptoms during such a critical period of development might be something in need of much greater inspection in terms of improving access to education for those diagnosed.

Finally is the question of what can be done to improve QoL for those diagnosed with ME/CFS. From a biological perspective, I might draw your attention to various discussions on this blog about the ways and means research has tried to intervene to ameliorate symptoms as a possible means to improve QoL (see here and see here for example). With no medical or clinical advice given or intended, science continues to approach the idea that within the spectrum of conditions probably included under the heading(s) of ME/CFS, there may be viable treatment options available [3] assuming further investigations. I might add that one area that particularly interests me is a possible role for enterovirus in at least some ME/CFS [4] and where this could eventually lead in terms of potential intervention(s). Added to this are the various other ways and means that society can help insofar as improving healthcare access, recognising that the risk of various comorbidity might be heightened following a diagnosis (see here) and ensuring that appropriate adjustments are made for a person in terms of finance, education and/or employment and other areas when a diagnosis is eventually made.

In short, more needs to be done to ensure that those diagnosed with ME/CFS are not subject to further health inequality...

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[1] 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.

[2] Winger A. et al. Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study. Health Qual Life Outcomes. 2015 Jul 3;13(1):96.

[3] Fluge Ø. et al. B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment. PLoS ONE; 2015: 10(7): e0129898.

[4] Chia JK. The role of enterovirus in chronic fatigue syndrome. J Clin Pathol. 2005 Nov;58(11):1126-32

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Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, & Ehlers L (2015). The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PloS one, 10 (7) PMID: 26147503





Winger A, Kvarstein G, Wyller VB, Ekstedt M, Sulheim D, Fagermoen E, Småstuen MC, & Helseth S (2015). Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study. Health and quality of life outcomes, 13 (1) PMID: 26138694