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

This clearly shows PwME to have similar mental and emotional capabilities as PwMS, but much more impaired physical and social capabilities.

 

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)?

 

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?

 

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.).

 

Yes, you are right, my wording might have been better to say "This clearly shows the possibility that PwME have ..."

 

Not meant as a criticism of you, Barry!

 

No that's fine @Sasha, I took it as a healthy critique of what I said, not of me personally .

 

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

 

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:

At the same time it doesn't necessarily mean the sample is fully representative of people with ME/CFS.

 

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:

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.

 

https://twitter.com/user/status/1017801642509524993

Small proviso: the overall groups were gender- and age-matched but not everyone is included in this graph

 

https://twitter.com/user/status/1017889426914136066

 

https://twitter.com/user/status/1017893074352201730

 

I don't think this is meant to be a competition over who is sickest, just that MS is considered a terrible disabling disease and ME a trivial complaint of whiners.

 

I dislike the term "rehabilitation" with regard to ME/CFS. I think this is my only quibble with the paper.