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Analysis by Jason - Chronic fatigue syndrome versus systemic exertion intolerance disease

Discussion in 'Latest ME/CFS Research' started by medfeb, Jun 16, 2015.

  1. medfeb

    medfeb Senior Member

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    I didn't see this posted anywhere yet

    Chronic fatigue syndrome versus systemic exertion intolerance disease

    Leonard A. Jason*, Madison Sunnquist, Abigail Brown, Julia L. Newton, Elin Bolle Strand & Suzanne D. Vernon
    Fatigue: Biomedicine, Health & Behavior. Published online June 15
    http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1051291#.VYAkkVVViko

    Background: The Institute of Medicine has recommended a change in the name and criteria for chronic fatigue syndrome (CFS), renaming the illness systemic exertion intolerance disease (SEID). The new SEID case definition requires substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise, and either cognitive impairment or orthostatic intolerance.

    Purpose:
    In the current study, samples were generated through several different methods and were used to compare this new case definition to previous case definitions for CFS, the International Consensus Criteria for myalgic encephalomyelitis (ME-ICC), the Canadian myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) definition, as well as a case definition developed through empirical methods.

    Methods:
    We used a cross-sectional design with samples from tertiary care settings, a BioBank sample, and other forums. Seven hundred and ninety-six patients from the USA, Great Britain, and Norway completed the DePaul Symptom Questionnaire.

    Results:
    Findings indicated that the SEID criteria identified 88% of participants in the samples analyzed, which is comparable to the 92% that met the Fukuda criteria. The SEID case definition was compared to a four-item empiric criteria, and findings indicated that the four-item empiric criteria identified a smaller, more functionally limited and symptomatic group of patients.

    Conclusion:
    The recently developed SEID criteria appears to identify a group comparable in size to the Fukuda et al. criteria, but a larger group of patients than the Canadian ME/CFS and ME criteria, and selects more patients who have less impairment and fewer symptoms than a four-item empiric criteria.

    Moderators - If this isn't in the right place, could you please move it. Thank you.
     
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  2. Valentijn

    Valentijn Senior Member

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    I'm surprised it creates a group as big as Fukuda. Perhaps it's due to the bizarre focus on sleep and lack of clarity regarding PEM in the briefer part of the definition? PEM is explained more in-depth elsewhere in the IOM document, but perhaps they ignored that for the purposes of this study.

    Does anyone know what the four-item empiric criteria refers to?
     
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  3. Sidereal

    Sidereal Senior Member

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    Interesting. It would be good to see the full text.
     
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  4. medfeb

    medfeb Senior Member

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    I believe its a set of criteria that Jason derived empirically through data mining techniques over the top of the data sets that he uses in these analyses.
     
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  5. Denise

    Denise Senior Member

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    Fatigue, post-exertional malaise, neurocognitive problems and unrefreshing sleep.
     
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  6. Valentijn

    Valentijn Senior Member

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    Odd ... so the extra SEID patients would be solely from having optional OI instead of optional cognitive issues.
     
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  7. msf

    msf Senior Member

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    Ooh, looks like the SEID people should have invited Jason to participate...I guess I would be a bit annoyed if I'd just spent the last 10 years working towards a definition for an illness and some other people came up with one over a weekend (I may be overestimating and underestimating the respective time frames).
     
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  8. Valentijn

    Valentijn Senior Member

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    Yeah, it does feel a bit like sour grapes. I just can't fathom a rational way for his nearly-identical definition to be more exclusive and indicative of significantly greater severity, if both definitions are applied correctly.
     
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  9. eafw

    eafw Senior Member

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    He is quoted or referenced over 200 times in the IOM report, that's quite a decent representation.


    He has another paper, from Feb 2015, looking at other case definitions and his own four-symptom set

    http://www.tandfonline.com/doi/pdf/10.1080/21642850.2015.1014489

    Screenshot from 2015-06-17 09:01:13 mod.png


    this diagram (screenshot from page nine of the February paper, with green dot added by me roughly where SEID would go) shows how the criteria compare. I can't access the other paper linked at the start of the thread, so don't know if he has a similar diagram in that one.

    The difference between the SEID and Jason definitions is OI vs neurocognitive, and gives 88% vs 62 %.

    Not unexpected that his neurocog requirement narrows it down to fewer people and more severe symptoms than Fukada, but am suprised that the OI requirement doesn't also as OI is associated with worse disabilty and many people with OI have cog problems along with it.

    Edit to clarify: SEID requires OI or cognitive, so we need to know what Jason is defining as neurocognitive to account for the large discrepancy. I can't find his definition in either of these papers - does anyone have this ?

    Edit again: to correct dates and layout
     
    Last edited: Jun 17, 2015
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  10. eafw

    eafw Senior Member

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    Have found these links. The video is interesting, Jason is there, at one of the presentations to the IOM committee

    http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05/Videos/Speaker Presentations/11-Lange-Video.aspx

    and a previous paper by Jason on POTS and cognitive impairement

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3655280/

    Seems that his neurocog and the IOM cog are more or less the same, so not obvious what might be going on here with the discrepancy between the definitions just by adding in the OI as an alternative to the cognitive symptoms.
     
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  11. Bob

    Bob

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    I wish I could keep up with Jason's work. I find it very interesting but he's so prolific that I've got a massive backlog of his papers that I can't bring myself to read. Also, of the papers that I have read, I often find it a struggle to follow his exact methodology, not necessarily because of the complexity, but because some details don't always seem to be carefully explained. Or, at least, I find it difficult to find certain details, but that might be because of my concentration deficit rather than any oversight in his part. The details that I want may be presented in a way that's not obvious to me.
     
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  12. eafw

    eafw Senior Member

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    I've downloaded the paper and had a very quick skim (as it's past bedtime!), but this might go some way to explaining the discrepancy: the OI criteria used are very weak

    To meet the orthostatic intolerance criteria, we did not have items related to light-headedness or spatial orientation, but we assessed this domain through the following items (at least one item; frequency and severity ≥ 2): feeling unsteady on feet, shortness of breath, dizziness or fainting, or irregular heartbeat.
     
    Last edited by a moderator: Aug 28, 2015
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  13. medfeb

    medfeb Senior Member

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    For me. this paper sheds light on two issues with the SEID criteria as they currently stand

    First, currently, the SEID criteria have not been fully operationalized (past severity and frequency) in the IOM clinical guide, whereas in Jason's paper, the criteria were more fully operationalized

    For instance, SF-36 is recommended as one of the tools to assess functional impairment. In his paper, Jason operationalized functional impairment as meeting "two of the following three criteria: role physical <50, social functioning <62.5, or vitality <35." But the IOM clinical guide provides no direction on how to use the SF-36 or even a requirement to use it. Its up to the doctors to decide how to assess functional impairment. That could end up encompassing a range of conditions. (Empirical diagnosed CFS if a patient had a poor score on just the emotional scale and none of the others listed above)

    Same issue for the other symptoms. So if the IOM criteria are not operationalized - with specification on how to use those tools and which to use - I'd think that the criteria would encompass an even broader population than Jason showed.

    The second issue is that Jason's data sets were diagnosed with Fukuda which has some exclusionary conditions. But the IOM criteria have dropped exclusionary illnesses. This could result in a more heterogeneous population of patients as Jason points out.
    "In addition, lack of clarity regarding recommendations for exclusionary illnesses, such as psychiatric disorders and medical illnesses, could lead to a more heterogeneous group of patients and higher prevalence rates in the general population.[19] This issue was not really dealt with in our study as our samples of patients, for the most part, had been screened to meet the Fukuda et al. [2] criteria, and using these criteria, these samples were screened to exclude those with exclusionary illnesses. "
    While I can understand the conceptual rationale behind the IOM's position, I am concerned that trying to achieve that at this time when using subjective criteria could lead to a waste bin - especially if the criteria are not well operationalized - and especially with a medical community primed to not believe

    One area that wasn't excluded in Fukuda that I'd think should be is somatoform illness, particularly because this disease has been linked to somatoform illnesses so often. IMO, it seems inconceivable to me that someone could have bodily symptoms that are an expression of a mental illness with no organic basis and at the same time have those same symptoms be due to an organic disease with neurological and immunological dysfunction
     
  14. jimells

    jimells Senior Member

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    It's just amazing to me that HHS could spend so much money on a report and definition that by itself is useless. So of course the solution is to now have another conference and report to maybe finish what should have been done the first time.

    I find it hard to believe this is just incompetence in writing the contract. They could have used the CCC or the ICC documents as models if they really had no idea of what is needed to have something useful for clinicians. This still looks like an exercise in distraction, to make it look like they are doing something useful.
     
  15. Dolphin

    Dolphin Senior Member

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    This is the Jason empiric criteria:
    The DePaul Symptom Questionnaire (DSQ) asks about various neurocogntive symptoms:

    The SEID criteria were operationalized with regard to cognitive impairment as follows:
    While with the Jason empiric criteria, you have to answer one specific question. If you said you had problems with all the other neurocognitive symptoms but not this one, one wouldn't satisfy the Jason empiric criteria. I find this very unsatisfactory.

    I know in my own case that difficulty finding the right word hasn't been as obvious as some other neurocognitive problems.
     
    Last edited: Aug 28, 2015
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  16. Dolphin

    Dolphin Senior Member

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    While I think the IoM definition has some merit, I'm not sure by the "cognitive impairment or orthostatic intolerance" aspect. I think "cognitive impairment" alone would likely have been good enough.

    Here's what the data found in this study:

    At the same time, the orthostatic intolerance criteria does increase the sensitivity of the criteria. And may not be that problematic in terms of the specificity i.e. people who definitely don't have ME/CFS/SEID being counted as having the condition.
     
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  17. Dolphin

    Dolphin Senior Member

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    Here's a table from the paper:
    Jason 2015 CFS vs SEID Table 1.jpg
     
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  18. Dolphin

    Dolphin Senior Member

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  19. Dolphin

    Dolphin Senior Member

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    I don't think it's been expressed in this thread but some people seem to make big distinctions between those who satisfy criteria which require lots of symptoms like the International Consensus Criteria and the Canadian Consensus Criteria are criteria that require fewer symptoms like the SEID criteria and make out that they are different groups of patients.

    I know in my own case, at different times in my illness (so in the one body) I have had more symptoms than others. So when I was more mildly affected I had fewer symptoms (and might not have satisfied the International Consensus Criteria and the Canadian Consensus Criteria unless you'd put me on a threadmill for a few days in a row) but then as I became more severe, I had more symptoms. And when I have had flares I have had more symptoms again and they were more severe.
     
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  20. lansbergen

    lansbergen Senior Member

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    And the more I improve the less symptoms and less severe.
     
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