1. The 'News In Brief' post for w/c 8th October is now available Guest, click here.
    Dismiss Notice

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

Discussion in 'BioMedical ME/CFS Research' started by Cheshire, Mar 13, 2018.

Tags:
  1. Cheshire

    Cheshire Senior Member (Voting Rights)

    Messages:
    704
    Likes Received:
    7,674
    Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda

    https://link.springer.com/article/10.1007/s41669-018-0071-6
     
  2. MErmaid

    MErmaid Guest

    Messages:
    1,419
    Likes Received:
    7,435
    Location:
    Under the Sea
  3. Cheshire

    Cheshire Senior Member (Voting Rights)

    Messages:
    704
    Likes Received:
    7,674
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    2,995
    Likes Received:
    19,649
    This clearly shows PwME to have similar mental and emotional capabilities as PwMS, but much more impaired physical and social capabilities.
     
  5. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,033
    Likes Received:
    15,966
    Location:
    UK
    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)?
     
  6. Andy

    Andy Committee Member

    Messages:
    3,836
    Likes Received:
    28,833
    Location:
    Hampshire, UK
    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?
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,033
    Likes Received:
    15,966
    Location:
    UK
    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.).
     
    Amw66 likes this.
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    2,995
    Likes Received:
    19,649
    Yes, you are right, my wording might have been better to say "This clearly shows the possibility that PwME have ..."
     
    Sasha likes this.
  9. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,033
    Likes Received:
    15,966
    Location:
    UK
    Not meant as a criticism of you, Barry! :)
     
    Barry likes this.
  10. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    2,995
    Likes Received:
    19,649
    No that's fine @Sasha, I took it as a healthy critique of what I said, not of me personally :).
     
    Lisa108 and Sasha like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    1,833
    Likes Received:
    15,138
    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
     
    Last edited: Apr 15, 2018
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    5,003
    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.
     
    adambeyoncelowe, Sean, Trish and 3 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    5,003
     
    adambeyoncelowe likes this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    5,003
    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.
     
    adambeyoncelowe likes this.
  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    541
    Likes Received:
    5,325

    Small proviso: the overall groups were gender- and age-matched but not everyone is included in this graph
     
    Last edited: Jul 13, 2018
    adambeyoncelowe, Sly Saint and Trish like this.
  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    541
    Likes Received:
    5,325
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    541
    Likes Received:
    5,325
    kingdon 2018 Table 3.PNG
     
    adambeyoncelowe and Wonko like this.
  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    541
    Likes Received:
    5,325
  19. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    196
    Likes Received:
    1,548
    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.
     
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    5,003
    I dislike the term "rehabilitation" with regard to ME/CFS. I think this is my only quibble with the paper.
     

Share This Page