The functional status and well being of people with ME/CFS and their carers, BMC Public Health, 27 May 2011

May 28, 2011


From BMC Public Health (open access journal), 27 May 2011

Luis C Nacul , Eliana M Lacerda , Peter Campion , Derek Pheby , Maria DE L Drachler , Jose C Leite , Fiona Poland , Amanda Howe , Shagufta Fayyaz and Mariam Molokhia

BMC Public Health 2011, 11:402doi:10.1186/1471-2458-11-402

Published: 27 May 2011
Abstract (provisional)

Background
Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.

Methods
We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2TM. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.

Results
SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for ‘Role-Physical' (mean= 25.4) and ‘Mental Health' (mean=36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (45.5).

Conclusions
ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

2 thoughts on “The functional status and well being of people with ME/CFS and their carers, BMC Public Health, 27 May 2011”

  1. For those like meself who haven’t a clue or can no longer remember what SF-36 refers too:

    http://www.sf-36.org/tools/SF36.shtml

    While one would not want to detract from the conclusion reached above, one wonders whether this would stand up to scrutiny were it to reveal a more unsatisfactory one?

    Mind you, sometimes questionnaires do work in one’s favour I suppose 😉

  2. A list of physical abnormalities in ME from Dr DeMeirler:

    Blood sedimentation rate is 1-2mm per hour (normal range 12-23mm/hour)
    Thrombositosis
    Eosinophilia – whatever that is
    Low Uric acid indicating a shift to a TH2 immune profile
    Copper/ceruloplasmin raised
    AST/ALT raised (indicating immune activation)
    Gamma GT
    D3 levels abnormal
    Alcaline phosphates lowered
    abnormal Ferratin – can be raised or lowered
    Ig1/Ig3 lowered
    Abnormal protein electrophoresis
    Lymphocytes down to half normal
    CD4++ lowered
    NK cells altered
    B cells can be up or down from normal
    CD14 raised in 90% of cases (correlates to severity)
    C4a up in 80%
    Perforin mRNA abnormal
    Low stool IgA in 98%

    A large number of ME/CFS early morning urine samples were tested, and the results showed 80% with a TH2+ or ++ profile.

    Fukuda 1994 has a lot to answer for.

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