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Unintended Consequences of not Specifying Exclusionary Illnesses for SEID (Jason 2015)

Discussion in 'Latest ME/CFS Research' started by Bob, Jun 23, 2015.

  1. Bob

    Bob

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    via Lenny Jason on Twitter: https://twitter.com/CenterRes/status/613344144375873536

    Open Access

    Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease
    Leonard A. Jason, Madison Sunnquist, Bobby Kot, and Abigail Brown
    23 June 2015
    Diagnostics 5, 272-286
    doi:10.3390/diagnostics5020272
    http://www.mdpi.com/2075-4418/5/2/272

     
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  2. sarah darwins

    sarah darwins I told you I was ill

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    Eek!

    I just scanned that paper. If I'm reading it right, they used 3 groups: existing diagnosis of CFS, existing diagnosis of MDD (Major Depressive disorder), and a control group.

    27% of the group with MDD met the SEID criteria.

    It’s not a big study — just 45 participants — but if further studies yield similar results, that would seem like a big step backwards.

    Getting the diagnostic criteria right seems much more important to me than the choice of name.
     
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  3. Valentijn

    Valentijn Senior Member

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    He seems to be completely incapable of either understanding PEM or assessing it in patients in studies. I give up.
     
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  4. sarah darwins

    sarah darwins I told you I was ill

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    Is that a junk paper, Valentijn? I just skimmed through it. I'm not qualified to evaluate it.
     
  5. jimells

    jimells Senior Member

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    The entire SEID exercise and report seems like a conclusion without bothering to test the hypothesis. I think even a high school science student can understand that might be a problem...

    After a few more studies like Jason's and it will be time to repeat the entire charade all over again.
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    I don't believe it is that simple and Jason is simply showing how simplistic criteria based on questionnaires can go wrong.

    If you have a better way of operationalising it, then tell us how to do it. Or better still, send him an email showing your method.
     
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  7. Sidereal

    Sidereal Senior Member

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    So in this study 7 out of 15 patients with SLE met SEID criteria as did 5 out of 15 MS patients.

    PEM is mandatory to make the diagnosis of SEID so either PEM is not unique to ME/CFS or it's not being elicited correctly by Jason et al or these patients have comorbid ME/CFS.
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    I've known of a few people with SLE who were originally diagnosed with (Australian Criteria) CFS, before developing more specific SLE symptoms years later. Generic symptom descriptions do certainly overlap despite what we may wish.
     
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  9. sarah darwins

    sarah darwins I told you I was ill

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    I'm getting really confused now.
     
  10. Bob

    Bob

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  11. Valentijn

    Valentijn Senior Member

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    If his depression patients can be diagnosed with SEID, then he's interpreting the PEM requirement in a ridiculously broad manner.
     
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  12. Bob

    Bob

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    I've just skimmed through the paper. There are four separate analyses in the one paper. I didn't read all of these analyses but skipped to the discussion instead. I might not be accurately reflecting the discussion (as it's multifaceted, I've only read it once, and I'm going from memory) but, in a nut shell, he seems to be saying: that diagnosis of ME/CFS is complex; that the SEID consensus criteria should have been empirically tested; that there is considerable overlap between symptoms in ME/CFS and other diseases; that people with purely primary psychiatric ("affective") disorders will get misdiagnosed with SEID; that SEID are not an appropriate set of criteria for research purposes because of the potential inclusion of comorbid illnesses and the potential for misdiagnosis; and that they're not ideal for clinical purposes for similar reasons; that SEID criteria do not tend to select healthy patients/controls; and that SEID criteria do select more parents with a comorbid illness than previous criteria. He does not make substantial comparisons to CCC and ICC in this paper; he compares SEID to a Fukuda cohort.

    He also suggests that a set of criteria needs to be agreed by the community.

    Personally, I think we'd do best using Jason's De Paul questionnaire for research purposes, which I think can simultaneously diagnose patients with Fukuda and/or CCC and/or ICC just from a single completed questionnaire fed into a computer program for analysis.
     
    Last edited: Jun 23, 2015
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  13. Esther12

    Esther12 Senior Member

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    I doubt PEM can be defined in a way in which it is unique to ME/CFS. To me it has always sounded like the sort of thing you get with the flu and stuff like that. I've no idea how common it relates to symptoms seen in MDD, and possibly I've been influence by claims that those with depression feel better when they get up and do stuff, and this could be BS.
     
  14. Bob

    Bob

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    Interesting point. He does seem to have used a loose interpretation of PEM, however, clinicians are likely to be equally broad in their interpretation, so he's probably accurately reflecting what will happen in the real world, don't you think?
     
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  15. Nielk

    Nielk

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    I think that PEM in the hands of ME/CFS experts is different than PEM in the hands of any GP who has no education or real experience with patients.
     
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  16. Bob

    Bob

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    I agree that PEM is very difficult to define, describe, and quantify, without biomarkers.

    I believe that the claim that depressive patients feel better if they get up and do stuff, or exercise, is a medical myth, along the lines of CBT. I read about this somewhere recently but I can't remember where. I think the idea is likely based on underpowered studies, and then caught on because it intuitively makes sense to people who don't have depression. (i.e. "you'd feel a bit better if you went out for a bit of fresh air and exercise".)

    But, I'm not aware of ever having met a depressive patient who said their depression felt worse after minimal exertion. So, surely, it can't be too difficult to exclude depressive patients from an ME/CFS diagnosis, using the PEM criteria? (But apparently it is.)

    I think one problem is that we're a heterogeneous group and we experience PEM in different ways, and to different degrees. So it's not easy to give it a precise definition.
     
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  17. user9876

    user9876 Senior Member

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    Being depressed shouldn't necessarily exclude patients which I think was the point they made with the SEIM guidelines. Someone can be depressed and have ME. So there was an attempt to characterize ME symptoms rather. So it should be a case of using the PEM criteria (which I can see need more understanding) and if someone who is depressed has PEM then they may well have ME and depression. If they have PEM they will need to learn to pace etc.

    Of course clinical trials and research are different since co-morbid conditions complicate results.
     
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  18. jimells

    jimells Senior Member

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    Are you referring to this?

    This doesn't sound like any description of PEM that I have ever seen, but probably not so different from what non-ME specialists might use.
     
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  19. Bob

    Bob

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    Thanks. When making my comments, I had in mind the Jason paper, in which he says that patients with a purely affective disorder will be misdiagnosed as having SEID. That's not related to the central issue in the paper of comorbid conditions, obviously, but it's an issue that he touches upon.
     
  20. jimells

    jimells Senior Member

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    This certainly reflects my own experience. I have dealt with depression on and off for most of my life. I never found activity to help, especially while taking SSRIs, since they frequently cause fatigue on their own.

    My past episodes of depression were nothing like the illness I have now. For me, PEM feels like a long-lasting hangover (I've only had a few, but that's enough to get the idea!), only worse.

    Patients and our expert physicians can recognize other patients instantly. Why can't other doctors? It would be interesting to see a study of who can more accurately diagnosis this illness: patients or GPs.
     
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