Functional Status and Well-Being in People with ME/CFS Compared with People with MS and Healthy Controls (2018) Kingdon and al.

Dolphin · Jul 14, 2018

4.2 People with ME/CFS: Access to Employment

These study findings suggest that people with ME/CFS are less able to continue employment after disease onset than PWMS, which may reflect the poorer physical functioning of people with ME/CFS and a lack of appropriate and effective treatments, and which could result from having a disease that is underrecognised and undersupported by employers [41]. Some people with ME/CFS who are able to continue working do so by sacrificing all or much of the social life they would otherwise enjoy [42]. Employers have been shown to be less accommodating to people without a visible disease or infirmity, such as occurs with back pain or depression [43, 44], and their behaviours towards people with ME/CFS are not always positive [41], despite the requirements of the UK Equality Act 2010 [45]. Public health authorities could play a major role in raising awareness of ME/CFS and educating employers around workplace support and modifications. Simple measures such as facilitating rest periods and adjusting light and sound exposure have been shown to be effective [46].
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It's not something I focus on much as I can't work but it could well be true that some people are frustrated in their efforts to work due to a lack of support.

Dolphin · Jul 14, 2018

ME/CFS and MS can fluctuate in severity both day-today and over longer periods. Since symptoms can be quite disabling, participants with ME/CFS in particular were only able to participate during a time in which they were feeling able to do so, and many appointments had to be rescheduled. This presents a challenge for a cross-sectional analysis such as this since the answers provided may not be fully representative of the experience of participants with ME/CFS on a typical day insofar as the results may underrepresent the impact and/or severity of ME/CFS symptoms.
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Though my guess is the results for the SF-36 would fluctuate less than the responses to many questionnaires due to the particular questions. They would in my case anyway but perhaps the responses for people who are ill for a shorter period of time or who fluctuate more might show greater variation.

Tom Kindlon · Jul 14, 2018

https://twitter.com/user/status/1018094695174541312

Tom Kindlon · Jul 14, 2018

https://twitter.com/user/status/1018095659197583360

Tom Kindlon · Jul 14, 2018

https://twitter.com/user/status/1018097628364660737

Tom Kindlon · Jul 14, 2018

https://twitter.com/user/status/1018102758195556354

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Functional Status and Well-Being in People with ME/CFS Compared with People with MS and Healthy Controls (2018) Kingdon and al.

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Functional Status and Well-Being in People with ME/CFS Compared with People with MS and Healthy Controls (2018) Kingdon and al.

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