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Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS

Discussion in 'Latest ME/CFS Research' started by charles shepherd, Jun 25, 2017.

  1. charles shepherd

    charles shepherd Senior Member

    Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS
    • Vageesh Jain Email author
    • Amit Arunkumar,
    • Caroline Kingdon,
    • Eliana Lacerda and
    • Luis Nacul
    BMC NeurologyBMC series – open, inclusive and trusted201717:117
    DOI: 10.1186/s12883-017-0896-0
    © The Author(s). 2017
    Received: 11 September 2016
    Accepted: 12 June 2017
    Published: 20 June 2017

    MEA comment:

    These are the results from another one of the internal research studies that are being carried out by members of the ME Biobank team (and visiting students) at the London School of Hygiene and Tropical Medicine and at the Royal Free Hospital in London - where the ME Biobank is based and forms part of the main University College London Biobank

    The ME Biobank is funded by the ME Association's Ramsay Research Fund and contains samples from over 500 people who have donated a blood sample for research purposes

    The ME Biobank consists samples from people with ME/CFS - including a severely affected cohort; people with multiple sclerosis/MS - who act as a second control group; and healthy controls. This equate to having over 30,000 aliquots available for research purposes,

    The ME Biobank is now able to supply blood samples to researchers who require them. The ME/CFS samples come from people with very well characterised ME/CFS (we use Canadian and Fukuda diagnostic criteria) along with a large amount of anonymised clinical data

    The study on risk factors relating to severe cognitive and sleep symptoms in ME/CFS, and in people with MS, makes use of the anonymised clinical data

    As the reasons for carrying out this study makes clear, severe cognitive function occurs in both ME/CFS and MS and there are some important overlaps between the two conditions in relation to neurological and immune system involvement in causation of both conditions

    In addition to confirming the presence of severe cognitive dysfunction and sleep problems in both ME/CFS and MS (but worse in ME/CFS), this study should prove helpful to people who need to provide this sort of evidence for benefit, insurance and employment disputes

    More information on the ME Biobank:

    End of year report from the ME Biobank (2016):

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    Link to full paper:


    There are considerable phenotypic and neuroimmune overlaps between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and multiple sclerosis (MS). While the precise aetiologies of both MS and ME/CFS are unclear, evidence suggests that deterioration in cognitive function is widely prevalent in patients with either condition. Little is known about differing risk factors or exposures, which may lead to severe cognitive or sleep symptoms. This study aims to gauge the extent of cognitive and sleep symptoms in ME/CFS and MS patients participating in the UK ME/CFS Biobank and identify the characteristics of those experiencing severe symptoms.

    This was a cross-sectional study of 395 UK ME/CFS Biobank participants, recruited from primary care and the community, using similar standardised protocols, and matched by age, sex and geographical area. Data were collected from participants using a standardized written questionnaire at clinical visits. Cognitive symptoms included problems with short-term memory, attention, and executive function. Sleep symptoms included unrefreshing sleep and poor quality or inadequate duration of sleep. All participants reported symptoms based on an ordinal severity scale. Multivariable logistic regression was carried out in the ME/CFS group to investigate socio-demographic factors associated with severe symptoms.

    All cognitive and sleep symptoms were more prevalent in the ME/CFS group, with ‘trouble concentrating’ (98.3%) the most commonly reported symptom. Severe symptoms were also more commonly reported in the ME/CFS group, with 55% reporting ‘severe, unrefreshing sleep’. Similarly, in the MS group, the most commonly reported severe symptoms were sleep-related. Logistic regression analysis revealed that ME/CFS patients aged over 50 years were more than three times as likely to experience severe symptoms than those younger than 30 (OR 3.23, p = 0.031). Current smoking was associated with severe symptoms, increasing the risk by approximately three times (OR 2.93, p = 0.003) and those with household incomes of more than £15,000 per year were less likely to experience severe symptoms compared to those earning less than this (OR 0.31, p = 0.017).

    Cognitive and sleep symptoms are more common in ME/CFS patients than in MS patients and healthy controls, providing further support for existing evidence of central nervous system abnormalities in ME/CFS. Our findings suggest that people with ME/CFS who are smokers, or have a low income, are more likely to report severe cognitive and sleep symptoms. Future research should aim to develop strategies to prevent the progression of severe cognitive and sleep symptoms through early interventions that prioritise patients identified as being at highest risk
    Esperanza, wastwater, Webdog and 2 others like this.
  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    But the question is still how to prevent these problems?

    I am rethinking an old hypothesis of mine that many of us, now possibly atypical ME patients, are encephalitis survivors. I wonder how prevalent that is? In this group I suspect that the time course is often toward worsening function. In some surveys of encephalitis survivors, which means there are all sorts of biases, most encephalitis survivors, though sometimes not much more than 50%, have many ME symptoms. I suspect this is a reasonable subgroup for study. Sadly I still see a lack of decent formal studies into this.

    That those of us over 50 are more likely to have cognitive issues is not a surprise to me. I am struggling to manage worsening cognition.

    We do have a need for strategies and treatments, but its still not clear what would work. Most of the obvious things have been tried, and have either failed or been of limited use. We need molecular pathology clues in order to determine specific targets for intervention. We also need further development of coping strategies specifically tailored to help ME patients cope.
    Esperanza, merylg, Webdog and 2 others like this.
  3. Webdog

    Webdog Senior Member

    Another study to show the new neurologist. He deals with MS patients all the time. He even has a neuro-Behcet's patient, but says I'm the first ME/CFS patient he's ever encountered. :confused:

    I was surprised to see how much more severe the reported cognitive symptoms were in ME/CFS than MS.

    I was also surprised at how low the depression score was for MS (23.4%). In the 2017 MS In America Survey, 53% reported depression.

    Also surprising (to me) was that only 10.5% of the ME/CFS group are current smokers. Contrast this with depression:
    Note there is a math error in the "No Depression" for MS (says 81.8%, should be 76.6%).

    Last edited: Jun 25, 2017
    MEMum likes this.
  4. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    I have wondered about this too. I once read that sinus infections lead to encephalitis more often than most people realized. I have had a couple of awful whole head sinus infections. It was one of those, the first and worst, that started my ME/CFS.
  5. Darach


    merylg and Webdog like this.

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