Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Unger et al: Multi-Site Clinical Assessment of ME/CFS (MCAM)

Discussion in 'Latest ME/CFS Research' started by mango, Mar 26, 2017.

  1. mango

    mango Senior Member

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    Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study

    Unger ER
    , Lin JS, Tian H, Natelson BH, Lange G, Vu D, Blate M, Klimas NG, Balbin EG, Bateman L, Allen A, Lapp CW, Springs W, Kogelnik AM, Phan CC, Danver J, Podell RN, Fitzpatrick T, Peterson DL, Gottschalk CG, Rajeevan MS; MCAM Study Group.

    Am J Epidemiol. 2017 Mar 17:1-10. doi: 10.1093/aje/kwx029. [Epub ahead of print]

    Abstract
    In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1.

    KEYWORDS:
    chronic fatigue syndrome; myalgic encephalomyelitis; patient-reported outcome measures; study methods

    https://www.ncbi.nlm.nih.gov/pubmed/28338983

    https://academic.oup.com/aje/articl...Assessment-of-Myalgic?redirectedFrom=fulltext
     
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  2. Keith Geraghty

    Keith Geraghty Senior Member

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    first look - the mean age was around 50 and a lot of the patients were above 50, not all, and a lot of them had college education - I suspect we might be seeing highly educated insured White folk with a bias towards those able and willing to push to get into specialist clinics in the US - because Jason had a study showing female immigrants to have high rates of CFS, perhaps these patients arent captured here - but hey ho no study can capture everyone

    still loads of interesting data - I shall read on
     
    Last edited: Mar 27, 2017
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  3. duncan

    duncan Senior Member

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    More data about questionnaires. Unger must be involved.
     
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  4. Gemini

    Gemini Senior Member

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    For those of us without access to article, your summaries will be most appreciated....
     
  5. Keith Geraghty

    Keith Geraghty Senior Member

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    [​IMG]

    whats interesting about this figure is
    1. just how bad pts are on physical function
    2. that the gap between mental health issues and the general population is the least - see black bar line thats data on healthy controls and then see diamond thats mean value for pts with CFS - this refutes this idea that CFS is a mental health illness or that pts with CFS have strong mental health (conversion disorder) problems
    3 - now compare gap with social function - pts with CFS clearly far far off healthy people

    such an interesting chart
     
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  6. A.B.

    A.B. Senior Member

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    What does social functioning and role physical refer to?
     
  7. Kati

    Kati Patient in training

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    Here are the 2 questions of the SF-36 pertaining to Social functioning. Low score= poor to no functioning.

    IMG_1830.JPG
     
  8. Keith Geraghty

    Keith Geraghty Senior Member

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    social f would be carrying out social activities - and role physical I guess to be ability to carry out physical activities
     
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  9. Kati

    Kati Patient in training

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    Here are the questions pertaining to physical role on SF-36:

    IMG_1835.JPG IMG_1836.JPG
     
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  10. Valentijn

    Valentijn Senior Member

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    Ability to socialize or do physical things. The SF36 explicitly doesn't make judgements based on the cause of it, or try to read anything into it.
     
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  11. Chrisb

    Chrisb Senior Member

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    I am trying to understand the mentality which would, in PF2, equate moving a table with playing golf. One activity taking place in one' s own home and taking perhaps 30 seconds; the other probably involving driving some distance to undertake a walk of 3 to 4 miles and taking, perhaps 4 hours.

    In SF1 they also fail to consider that "normal" social activities may be unaffected on the grounds that hardly any such interaction takes place.
     
  12. A.B.

    A.B. Senior Member

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    Loss of friends due to illness is a real thing.
     
  13. Kati

    Kati Patient in training

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    SF-36 is a general type of questionnaire, not specific at all to ME.

    And it is much, much better than the Chalder fatigue score :ill:
     
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  14. Tom Kindlon

    Tom Kindlon Senior Member

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  15. Tom Kindlon

    Tom Kindlon Senior Member

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    Unger 2017.png
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member

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    Unger 2017 2.png
     
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  17. Murph

    Murph :)

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    I like the way this study is shaping up. Good big sample size. It will be very positive when they do more of the analysis and try to match biological markers with the symptoms.

    Their stated goal #5 is particularly exciting:

    Identify measures that best distinguish persons with ME/CFS from those in the comparison groups and determine subgroups of persons who have ME/CFS with different underlying causes.

    But from looking at the graphics I have a question: The boxplot's whiskers go to the extremes of the data. And yet the circles are outliers? How does that work? why are the outliers not the extremes?!
     
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  18. HowToEscape?

    HowToEscape? Senior Member

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    Yeah but after enough social isolation nearly all ppl will have cognitive decline & other issues. Isolate a monkey and it's health declines sharply.
     
  19. Tom Kindlon

    Tom Kindlon Senior Member

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  20. anciendaze

    anciendaze Senior Member

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    There is a question in my mind raised by a question I have recently been asked concerning a heart condition known as Patent Foramen Ovale (PFO). Autopsies have long shown that over 25% of the population has this abnormality from birth. Asking what percentage of patients with another condition have a PFO runs into circular reasoning: the tests on living patients are difficult, expensive and present some risk, so doctors only test for this condition after a patient presents with stroke, heart attack, a serious TIA or paradoxical embolism. Such patients with known PFO would be excluded from a cohort for ME/CFS. This doesn't change the percentage of the general population with undetected PFO. We have to expect significant numbers in a cohort for ME/CFS, but with present data I see no way of even estimating the percentage.

    Because of the connection with exercise intolerance, migraines and episodic cerebral hypoperfusion, particularly while upright, this seems to be a very good question to consider, assuming you want to find a physiological cause of the disease. A casual review which I would not count as a meta-analysis suggests those running this and similar studies don't even want to know if undetected PFO is over-represented in the cohorts they assemble.

    I'm open to any suggestions on how one might answer this question that do not rely on circular reasoning to exclude the answer a priori.
     
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