The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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MKSAP Query on ME/CFS

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by duncan, Aug 21, 2017.

  1. duncan

    duncan Senior Member

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  2. TiredSam

    TiredSam The wise nematode hibernates

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  3. Manganus

    Manganus Senior Member

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    • I'm OK with no more testing,
    • the examination was in my opinion insufficient
      with regard to the diagnostic criteria, and also
      with regard to (more) differential diagnoses.
    • and unfortunately the authour missed the point about GET:
     
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  4. Karen Kirke

    Karen Kirke

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    Thanks for highlighting this, @duncan. I have concerns too. I have sent emails to both KevinMD.com and the American College of Physicians (publisher of MKSAP 17 from which the case study was reportedly excerpted). I focused on diagnosis only, picking my battles, as the saying goes.

    Could someone post the diagnostic algorithm for SEID on this thread? And then tell me how to do it? It's on p.10 of the clinician's guide to the IOM report here https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf (p.10 according to the numbering on the document, p.14 on Adobe Reader).

    Dear Kevin MD,


    I recently came across a diagnostic challenge on your website, for a 36 year old man with a history of fatigue:

    http://www.kevinmd.com/blog/2017/08/mksap-36-year-old-man-history-fatigue.html


    Since the diagnostic label used here is SEID, this patient should fulfil SEID diagnostic criteria, which were described in the 2015 IOM report. The patient described does not fulfil SEID diagnostic criteria.


    The history provided does not mention substantial decrease in function (required for diagnosis of SEID), post-exertional malaise (required for diagnosis of SEID), cognitive dysfunction or orthostatic intolerance (one or both are required for diagnosis of SEID), so the patient should not be diagnosed with SEID or ME/CFS.


    The clinician’s guide to the 2015 IOM report with SEID diagnostic algorithm can be downloaded for free here: https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf, with more detailed information available here: https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness.


    Putting testing and treatment aside, the physician in this case needs to go back and do a proper case history to ensure accurate diagnosis.


    I understand that this case was excerpted from MKSAP 17. Unfortunately by reproducing it, more physicians will be misled as to how to accurately diagnose SEID/ME/CFS.


    I hope you will consider removing it from your website, and replacing it with a case history that does fulfil SEID diagnostic criteria. Publication of the SEID diagnostic algorithm from p.10 of the clinician's guide (link above) would also be helpful.


    Please advise how you are going to rectify this situation.


    Kind regards,

    [​IMG]

    To ACP:

    Dear Sir or Madam,


    I recently came across what was described as an excerpt from the MSKAP 17, namely a diagnostic challenge for a 36 year old man with a history of fatigue:

    http://www.kevinmd.com/blog/2017/08/mksap-36-year-old-man-history-fatigue.html


    Since the diagnostic label used here is SEID, this patient should fulfil SEID diagnostic criteria, which were described in the 2015 IOM report. The patient described does not fulfil SEID diagnostic criteria.


    The history provided does not mention substantial decrease in function (required for diagnosis of SEID), post-exertional malaise (required for diagnosis of SEID), cognitive dysfunction or orthostatic intolerance (one or both are required for diagnosis of SEID), so the patient should not be diagnosed with SEID or ME/CFS.


    The clinician’s guide to the 2015 IOM report with SEID diagnostic algorithm can be downloaded for free here: https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf, with more detailed information available here: https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness.


    Putting testing and treatment aside, the physician in this case needs to go back and do a proper case history to ensure accurate diagnosis.


    This case history/diagnostic challenge will mislead physicians as to how to accurately diagnose SEID/ME/CFS. I hope you will consider removing it from your website, and replacing it with a case history that does fulfil SEID diagnostic criteria.


    One solution would be to ask one of the SEID/ME/CFS physician experts involved in the drafting of the IOM report and diagnostic criteria to submit a case history that does fulfil SEID diagnostic criteria, for example, Nancy Klimas (Nova Southeastern University, Miami), Ronald Davis (Stanford), Peter Rowe (Johns Hopkins) or Lucinda Bateman (Salt Lake City).


    Please advise how you are going to rectify this situation.


    Kind regards,
     
  5. alex3619

    alex3619 Senior Member

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    SEID is ME-light. It has its uses, though also limitations. It appears that this review was more like ME- and even SEID-eviscerated. I would love to see links to CCC and ICC guides included as well, but that might be asking a bit much.
     
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  6. Karen Kirke

    Karen Kirke

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    @Janet Dafoe (Rose49) I saw you commented on this piece. Do you think Ron and/or his colleagues who worked on the IOM report would be willing to submit a case study that could replace this one?
     
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  7. duncan

    duncan Senior Member

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    I had a couple of specific concerns, in order of their appearance in the article:

    1) At the end of the first paragraph and beginning of the second, in 2 of 3 sentences, depression and anxiety are brought up. Were there any ulterior motives in their inclusion? I do appreciate the differential diagnosis process, but these two references seemed conspicuous.

    2) The Question around which the Quiz is built, is which of the four following tests is most appropriate a)EBV b) Lyme c)HIV, d) no further testing is warranted. According to the article, the correct answer is D

    D is explained as the correct answer since supposedly this patient meets SEID requirements, which other posters have already suggested he may not.

    3) The article then states that Lyme testing is not warranted because "this patient's nonspecific symptoms are not consistent with Lyme disease". That is not entirely accurate. It may not be a classic presentation, but many cases of Lyme disease can generate similar symptom clusters. Depending on where this patient traveled (and arguably irrespective of his travel history), part of the differential diagnosis SHOULD include Lyme precisely because Lyme at times can present in this manner - and can present so similarly to ME/CFS, the supposedly correct answer.

    I am also unclear on why the authors state "the pretest probability of Lyme is low..." Did I miss something? How was this qualified?

    Can someone please explain to me this statement: "...testing for Lyme antibodies is not recommended by the American College of Rheumatology." What DOES that entity recommend for Lyme testing - a direct culture...?

    4) Finally, I have to question when it is ever advisable to recommend no further testing. I appreciate the economics, but I have to wonder how many physicians would stop all testing on themselves at this juncture, as presented in the Quiz?

    ETA: 5) I cannot believe I almost forgot to mention recommended treatment being GET and CBT. What guidance did this come from? I know the CDC modified its ME/CFS Patients' page; let's hope they change treatment recommendations on the physicians' page soon.
     
    Last edited: Aug 22, 2017
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    This is an excellent letter. Thank you for sending it. I will be very interested to hear of any response. Unfortunately, since Ron is not an M.D., he doesn't have case studies. But I bet it would be fairly easy to get one from Klimas, Kaufman, Gordon, Peterson, Cheney, Vernon, Bell, Bateman. Actually, it might be easiest to start with Lucinda Bateman. You can get her email from the Bateman Horne Center website. I hope they change this inaccurate, uninformed "lesson".
     
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  9. Karen Kirke

    Karen Kirke

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    Thanks for your response, @Janet Dafoe (Rose49)! Just seeing it now. I will try to contact Dr Bateman as you suggest.
     

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