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

Cheshire

Cheshire

Senior Member (Voting Rights)
Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda

Background
People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.

Objective
The aim of this study was to compare the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).

Methods
In this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.

Results
People with ME/CFS scored significantly lower than PWMS or HCs in almost all SF-36v2™ areas. Prominent were lower scores for people with ME/CFS in the Physical Component Summary and Role Physical and Social Function domains, while the smallest differences were seen in the Mental Health domain. Responses to the bespoke questionnaire indicated that people with ME/CFS in this study work fewer hours and have lower incomes compared with people in the other two groups.

Conclusions
Using SF-36v2™ scores as a proxy, people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society.
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https://link.springer.com/article/10.1007/s41669-018-0071-6
 
Barry said:
This clearly shows PwME to have similar mental and emotional capabilities as PwMS, but much more impaired physical and social capabilities.
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Does it, though? Wouldn't that require a large, random and therefore representative population sample of PWME to be taken, which doesn't seem to have been the case here? Ditto for the MS population (I don't know how the samples for the comparison sample were got)?
 
Sasha said:
Does it, though? Wouldn't that require a large, random and therefore representative population sample of PWME to be taken, which doesn't seem to have been the case here? Ditto for the MS population (I don't know how the samples for the comparison sample were got)?
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Well, it shows that of the population sample that they looked at, the question of whether that can be extrapolated to a wider population is a valid one, but hasn't there been studies in the States which show similar results?
 
Andy said:
Well, it shows that of the population sample that they looked at, the question of whether that can be extrapolated to a wider population is a valid one, but hasn't there been studies in the States which show similar results?
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I wonder if those studies also show a similar problem of sampling. One of our big issues is that the epidemiology on ME/CFS is pretty bad, because no one has put the money in. People seem to have done a lot of convenience sampling in ME/CFS, often centred around groups where you'd expect there to be a bias in favour of the more severely ill patients responding (such as online surveys within patients' organisations, specialist clinics, etc.).
 
Sasha said:
Does it, though? Wouldn't that require a large, random and therefore representative population sample of PWME to be taken, which doesn't seem to have been the case here? Ditto for the MS population (I don't know how the samples for the comparison sample were got)?
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Yes, you are right, my wording might have been better to say "This clearly shows the possibility that PwME have ..."
 
Blog:
Thursday, 12 April 2018
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."

rest of article here:

https://questioning-answers.blogspot.co.uk/2018/04/on-recognising-disabling-effects-of-MECFS.html
 
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I had wondered whether this might be a group of people with ME/CFS who are particularly severe. However it doesn't seem to be the case:
2.1 Recruitment for the UK Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Biobank


Between 2012 and 2015, the UK ME/CFS Biobank collected data and samples from participants in London and East Anglia; details of the UK ME/CFS Biobank protocol have been previously published [27]. Participants were recruited through National Health Service general practices and specialist services with support from the National Institute for Health Research (NIHR) clinical and research networks. Staff from the local NIHR Clinical Research Network (formerly the Primary Care Research Network) approached general practices in Norfolk and Suffolk to seek willingness to recruit participants. Once local ethical approval was in place, participating practices sent letters to registered patients with a diagnosis of ME/CFS, people with a diagnosis of MS, and potential HCs, inviting them to participate in the study. Three HCs were invited for each person with ME/CFS to be recruited. A higher response and recruitment rate was anticipated from people with the disease because people with ME/CFS are underrepresented in research studies and are therefore motivated to participate [34]. At the same time, specialty clinics in London, Norfolk and Suffolk approached their patients with ME/CFS and MS. Posters seeking HC volunteers were placed in general practice surgeries and institutes of higher education in the same regions. A full description of recruitment procedures can be found in the paper describing the establishment of the UK ME/CFS Biobank [27].
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Of the 52 participants with ME/CFS, 75% had mild–moderate symptoms and 25% had severe symptoms, reflecting an intentional recruitment ratio. Of those with MS who responded to the question (n = 42), 71% had remitting-relapsing MS and 29% had primary- or secondary- progressive MS.
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At the same time it doesn't necessarily mean the sample is fully representative of people with ME/CFS.
 
The four domains making up the MCS [Mental Component Summary] are measures of VT [Vitality], with questions about energy and tiredness; Social Function (SF); MH, which asks about psychological wellbeing, anxiety and depression; and Role Emotional (RE), which considers role limitations due to emotional problems. Since the VT domain is included in the MCS, the physical symptoms of ME/CFS and MS, especially fatigue, are likely to reduce that score, which should be borne in mind when interpreting results.
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I remember having a peek at some responses to the SF-36 questionnaire a student was using on people with ME/CFS.

These are the questions for the role emotional subscale:
During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
(circle one on each line)
a. Cut down on the amount of time you spent on work or other activities deleted
Y 1 N 3
b. Accomplished less than you would like deleted
Y 1 N 3
c. Didn't do work or other activities as carefully as usual deleted
Y 1 N 3
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Quite a number of people ticked yes yes yes to the three items. I knew some of these people and suspected some of them hadn't read the question properly and had ignored the bit specifying that this was to do it emotional problems. It looked that many were answering the questionnaire quite quickly and not reading the questions in this section closely.
 
kingdon 2018 Table 3.PNG
The odds of people with ME/CFS reporting being unemployed or working part-time were 13.5-fold those of HCs (p<0.001) and 3.4-fold those of PWMS (p = 0.016). These findings are consistent with the working hours/week from people with ME in relation to HCs and PWMS [odds ratio (OR) 17, p = 0.000; OR 4.6, p = 0.002, respectively]. Additionally, we found odds of 8.5 for an annual income lower than £19,999 for people with ME/CFS when compared with HCs (p = 0.004), and 3.0 when compared with PWMS (p = 0.033). Furthermore, the odds of people with ME being on benefits was 3.8 of the HCs (p = 0.008) and 2.4 those of PWMS (0.048).
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