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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A (bleedin' obvious) guide to happiness

Happy New Year!

Welcome back to Questioning Answers in 2017. While we wait to see just what this year will offer in [autism research] blogging terms, I open proceedings with the answer to happiness. Yes, you heard me right, I can officially unveil the Questioning Answers guide to happiness...

Drum roll please... and "Mental health and relationships 'key to happiness'."

As I unclutch my hands from my face and those opening 'bleedin' obvious' words included in the title of this post resonate once more alongside the question: 'how much did this research cost?' I direct you to some further discussion about the Origins of Happiness study (see here) from where results were derived.

Taken from: http://voxeu.org/article/origins-happiness

"So in short. If your suffering from depression your not very happy. Dontcha just love the intellectual elite" and "So in a nutshell, have the report's authors found that people not suffering with depression are generally happier than those that are suffering with it? How much are these geniuses paid?" are just two of the comments following that BBC coverage of the study results. With all due respect to the study authors and their introduction of new watchwords like 'wellbeing creation' over wealth creation, I am kinda reeling from the idea that we actually needed a study/report like this given the lack of surprising outcomes noted.

As per Figure 1 and the 'determinants of adult life satisfaction' is anyone really that surprised that having an education, a job, an income, being in rude health, having a special someone or even special 'some people', not being incarcerated or exposed to criminality and not suffering from depression and/or anxiety actually makes people more satisfied with their lives? No, and neither should you be.

I've little more to say on this topic aside from mentioning that (a) happiness is perhaps a relative term and something that includes both short-term and long-term elements to it and (b) the focus on treating mental health issues such as depression and anxiety with 'psychological therapies' (made by the author(s)) should not necessarily be to the exclusion of other well-validated treatment measures. Indeed, I might advance the position of a greater 'correlation' between physical health and mental health in light of other research findings (see here).

So: Be Happy! (I promise that my blogging this year will get better).

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Sick leave and income levels for parents of children with autism

"Parents of children with ASD [autism spectrum disorder] living in Stockholm, Sweden in 2006 were more likely to be on sick leave, not in the labor force, or earning low income when compared to parents who did not have a child with ASD and these results remained after adjusting for familial socioeconomic factors and parental psychiatric care."

That was the rather grim conclusion reached by Miranda McEvilly and colleagues [1] (open-access) following their analysis of families taking part in the Stockholm Youth Cohort (SYC) initiative [2] - "a record-linkage study comprising all individuals aged 0–17 years, ever resident in Stockholm County in 2001–2007 (N = 589,114)." From the huge number of participants, researchers identified 2,982 mothers/fathers with a child diagnosed on the autism spectrum: "1,207 had ASD with ID [intellectual disability] (or more than one child with ASD where at least one of the children had ASD with ID) and 1,685 had ASD without ID."

"Four outcomes, two for sick leave and two for work participation, were obtained using data from LISA in 2006." LISA by the way, refers to "the longitudinal integration database for health insurance and labor market studies (LISA)" based in Sweden and carries quite a bit of information about employment and related parameters. Participant data were analysed according to the presence of offspring autism and whether or not said autism was accompanied by ID or not. Various potential confounding variables were also added into the statistical mix as per the headline sentence above.

Results: well, we already know that parents with a child (or children) with autism were quite a bit more likely to be taking sick leave or not to be in work or to be on a low income compared to those without. This trend was particularly notable in mothers of children with autism. Researchers also reported that when comparing families with a child with autism and ID with those with a child with autism but no ID, several differences were also apparent. So: "Increased sick leave (15–365 days) is associated with parents of children with ASD without ID but not ASD with ID" (again, with mothers faring worse than fathers).

"Parents who have a child with ASD are more likely to experience stress, depression, and fatigue. Therefore it is not surprising that these parents take sick leave more frequently or participate less in the work force." As per this excerpt, the authors frame their findings within the perspective that parenting a child diagnosed with an ASD can carry its own particular stresses and strains outside of those more generally associated with parenting. I've covered this topic before on this blog and how, without blaming or stigmatising, there is a growing recognition of the need for additional support services for those parents (see here). The fact that Sweden has specific policies "aimed at helping families of children with ASD, both with well-being and with ability to work" also seemed not to be as effective as perhaps initially thought as "these parents remain a vulnerable group for which additional support might be warranted."

This is valuable data that adds to previous discussions about how the presence of familial autism can [variably] impact well beyond individuals and contribute to some of the societal inequalities that have been noted. One might quibble with some of the study mechanics such as the inclusion of "parents with children with other disabilities" in the comparison group or the lack of emphasis on other autism-associated comorbidities (in these days of ESSENCE) outside of ID and how they may impact on parental employment and earnings, but this is perhaps research fodder for a different time.

"It can also be noted that being on sick leave, outside of the work force or earning a low income will have long reaching impact on these parents because of Sweden’s pension system which is based on an individual’s life time earnings." This is another potential outcome that the authors focus in on as a consequence of their findings. One might put forward the viewpoint that where noted both inside and outside of Sweden, further preferential economic policies could be put in place as and when a child is diagnosed to secure both their future and that of their parents too. Also: "It is recommended that further studies be done to see what support mothers and fathers would find most beneficial and what support they are lacking." I cannot disagree with that last sentiment.

Music: David Bowie - Five Years.

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[1] McEvilly M. et al. Sick Leave and Work Participation Among Parents of Children with Autism Spectrum Disorder in the Stockholm Youth Cohort: A Register Linkage Study in Stockholm, Sweden. Journal of Autism and Developmental Disorders. 2015; 45: 2381.

[2] Idring S. et al. Autism Spectrum Disorders in the Stockholm Youth Cohort: Design, Prevalence and Validity. PLoS One. 2012; 7(7): e41280.

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McEvilly M, Wicks S, & Dalman C (2015). Sick Leave and Work Participation Among Parents of Children with Autism Spectrum Disorder in the Stockholm Youth Cohort: A Register Linkage Study in Stockholm, Sweden. Journal of autism and developmental disorders PMID: 25697737