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Chronic fatigue syndrome and co-morbid and consequent conditions...

Discussion in 'Latest ME/CFS Research' started by Kati, Dec 7, 2014.

  1. Kati

    Kati Patient in training

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    Chronic fatigue syndrome and co-morbid and consequent conditions: evidence from a multi-site clinical epidemiology study

    Lucinda Bateman, Salima Darakjy, Nancy Klimas, Daniel Peterson, Susan M. Levine,Ali Allen, Shane A. Carlson, Elizabeth Balbin, Gunnar Gottschalk and Dana March

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2014.978109#.VISPUeF87CK

     
  2. Kati

    Kati Patient in training

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    Large cohort. Big names. Curious to see 'what's inside'.
     
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  3. CBS

    CBS Senior Member

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    FYI - This study was a CFI project. The patients were drawn from four of the clinics participating in the CFI pathogen/Lipkin study (Miami, New York, Nevada, Utah). While these patients may have participated in the CFI pathogen study, that is not necessarily the case as this cohort is far larger than the pathogen cohort and selection of patients was independent (selection criteria for this project excluded a subgroup of the pathogen patients).
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    16.4% had cancer malignancy, hmm... Mean age 55 +-11 or so years.
     
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  5. alex3619

    alex3619 Senior Member

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    Which is very similar to the survey data that Leonard Jason published years ago.
     
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  6. DanME

    DanME Senior Member

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    Hi there,

    I have read the study, here a small summary.

    Participants: 18+, Fukuda Criteria, Four Clinical Sites in the US: Miami, Nevada, New York, Salt Lake City. 960 completed a telephone survey. Included only (from >1500 patients), if diagnosed min 5 years earlier at one of the four sites.

    Demographics seem to be typical for a clinic based sample.

    Mean age: 55 years
    Mean age at onset: 35 years
    Female: 80%
    White: 95%
    CFS mean duration: 15 years
    Currently working or attending school (or equivalent): 40%

    Comorbidity:

    Fibromyalgia 61%,
    Hypothyroidism: 35%
    Spine problem: 26,5%
    Other autoimmune diseases: 15%
    Narcolepsy: 3%
    Sleep apnoea: 22%
    Restless leg syndrome: 17,5%
    Endometriose: 20%
    Low testosterone: 36%
    Cancer malignity: 16,4% (majority skin cancer in Florida and Nevada with 7,4%)
    Cancer malignity without skin cancer: 9%, which is twice as high as the general population
    Depression: 47%
    Anxiety: 39%
    PTDS: 13%
    Bipolar disorder: 3,0%
    Other neurological diseases: 9,4%

    Any comorbidity, except from depression and sleep apnoea, decreased functional ability to engage in work or school. The high rates of affective disorders are comparable to other neurological diseases like MS, but not to other chronic diseases in general (around 25%).

    They measured sudden and gradual onset, too, but don't give any numbers.
     
    Last edited: Dec 8, 2014
  7. A.B.

    A.B. Senior Member

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    Thanks. I would have been interested in any differences between sudden and gradual onset.

    I wonder if some of these hypothyroidism cases might just be improperly treated hypothyroidism.

    And what is with over a quarter having a "severe spine problem"?
     
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  8. Esther12

    Esther12 Senior Member

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    Thank you. Nice to have the data pulled out like that.
     
  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The article appears to be behind a paywall. How is it some of you are able to see more than the abstract alone? Thanks.
     
  10. xchocoholic

    xchocoholic Senior Member

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    "Nearly 60% of the sample reported a mental illness."

    Seriously ? When are they going to figure out that we'd feel much better mentally, physically and emotionally if they'd make some real progress in the me/cfs arena. Those of us who became ill before the internet were completely lost.
     
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  11. Kati

    Kati Patient in training

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    i would suggest that hypothyroid with low testosterone could mean HPA axis dysregulation as a consequence of having ME more than primary hypothyroid.
    If patients mention hypothyroidism, chances are this is already being addressed medically.
     
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  12. A.B.

    A.B. Senior Member

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    Yes, but are they getting the right treatment? Many patients report that looking at the TSH and treating with T4 alone isn't sufficient. Some doctors recognize this, others don't.
     
  13. Kati

    Kati Patient in training

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    Look, personally, it didn't make a difference whether I was on Synthroid or Cytomel. i still feel shitty.

    ETA remember that these patients have been seen by our own experts. Klimas,Peterson, Bateman ans Levine. No spring chicken.
     
    Last edited: Dec 8, 2014
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  14. DanME

    DanME Senior Member

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    I am still a student and have access to all sort of studies at my university library.
     
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  15. alex3619

    alex3619 Senior Member

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    I do find this interesting. Even anecdotally many of us have spinal issues. I wonder if its causal or consequential. Exhaustion may easily lead to poor posture, but poor posture can lead to nerve and muscle issues. Or is it a bit of both, or a statistical anomaly?
     
  16. Thomas

    Thomas Senior Member

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    What about IBS? I struggled with that for most of my life and think it had a lot to do with my sudden ME onset 3 years ago...
     
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  17. DanME

    DanME Senior Member

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    My back feels quite weak, especially while sitting. I always thought it is caused by the weakness of the deep muscles, which stabelize the spine. Maybe poor blood perfusion or something else. I guess this could cause a lot of trouble over time. The deep muscles have three or four layers to give the spine more power.
     
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  18. xchocoholic

    xchocoholic Senior Member

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    me too. The last time I took flouroquinolones this was an obvious side effect along with frozen shoulders and popping knee caps.

    My me/cfs became full blown after 3 successive rounds of antibiotics in 1990. These were taken for non stop green mucous in my lungs. Tmi. Lol.

    Based on my last reaction to quinolones in Jan 2013, I think the ones I was given in 1990 were quinolones too.

    Hypoperfusion makes this worse of course.

    Have you tried strengthening your back ? I keep meaning to but I'm occupied with daily living. Exercise has helped my legs, neck and abdomen muscles recover tho.

    Eta. I believe my body's inability to process gluten (dq2 gene) stopped me from healing from the first quinolone assault in 1990. My 1990 reaction, chronic muscle spasms, didn't begin to heal until 2006-7 after eliminating gluten in 2005. The worst part of second reaction, frozen shoulders, starting in 1/2013, lasted 9 months ? more or less. I'm not sure if some of my other symptoms can be attributed to this assault.
     
    Last edited: Dec 9, 2014
  19. Kati

    Kati Patient in training

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    Spine problems.. Do they mean bony issues, muscles issues or inflammation issues as in myelitis?
     
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  20. CBS

    CBS Senior Member

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    My bolding - @alex3619 - Subjects were asked to only report conditions with onset after CFS/ME onset.

    "Have you been diagnosed by a medical professional with any of the following conditions since/after the onset of CFS").​

    This also should be kept in mind regarding psychological issues (the term "consequent" in the title was deliberate, the term co-morbid was used to account for the possibility that some minority of patients any not have restricted themselves to reporting consequent conditions - conditions that presented simultaneously with CFS were recorded:

    Lastly, this is from the discussion (again, my bolding):

    "Nearly 60% of our participants reported the emergence of mental health symptoms (depression, anxiety, PTSD, and/or bipolar disorder), which is strikingly similar to other published reports addressing clinic- [10-12] and community-based [30] samples. The prevalence of mental health diagnoses in our sample is somewhat lower than a prospective study of CFS patients by Wessely and colleagues [8] and higher than a recent report from a Belgian sample of CFS patients [13]. The mental health diagnoses reported by participants were not necessarily determined by diagnostic criteria or structured interviews, but the high prevalence is sobering. Depression as a co-morbid condition is notably high in patients with chronic illness (15-25%) compared to healthy primary care patients (5-10%), and the highest rates (40-50%) are in patients with neurological illness [31]. In our study, the higher prevalence of depression reported by the Utah subsample could have resulted from differences in clinical approaches, for example a physician who actively checks in with patients about mental health issues. Furthermore, numerous studies have demonstrated that depression is more prevalent in women [32, 33], and the Utah subsample included a greater proportion of women than the Florida and Nevada subsamples. However, the lower prevalence of depression in the New York subsample, which relative to other sites comprised the largest proportion of women, contradicts this explanation. The high rates of affective disorders in our CFS subjects may reflect the severely disabling nature of the disorder, high symptom burden, lower quality of life, and biologic changes in the brain secondary to chronic illness [34]. Our subjects had been diagnosed and treated by CFS specialists, but a 2003 population based study [35] showed that less than 20% of cases had been diagnosed or treated for CFS by any physician, a situation which could additionally increase the rates of secondary depression or anxiety.​
     

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