Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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IOM Criteria to Be used in Research for NIH Center of Excellence

Discussion in 'Action Alerts and Advocacy' started by Nielk, Oct 2, 2017.

  1. Nielk

    Nielk

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    It is not surprising to me and that is why I prefer the ICC which I have commented on above.

    I totally disagree.
     
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  2. anciendaze

    anciendaze Senior Member

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    Unfortunately, the IOM diagnostic criteria were never reduced to usable clinical form. In NIH jargon this would be "operationalized", a transmogrification that turned the Fukuda definition into a BPS version. Both the CCC and ICC forms have been used in clinical practice, even though they have never been used by the NIH or CDC. We are left with the feeling that, once again, the disease will be whatever the NIH says it is, which will vary with political pressure from above.
     
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  3. A.B.

    A.B. Senior Member

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    http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1299079
     
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  4. A.B.

    A.B. Senior Member

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    To which Leonard Jason et al responded with:

    http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1362780?src=recsys

    The response by Lily Chu et al:

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1362750

    They make some excellent arguments here.
     

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    Last edited: Oct 2, 2017
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  5. Nielk

    Nielk

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    Lily Chu should not be analyzing the IOM criteria. She served on the panel.
     
  6. Wally

    Wally Senior Member

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    What bothers me is that some of the I.O.M. Report recommendations are now being cherry picked for use in the newly funded research projects. I am not aware that this Report was ever "officially" reviewed or ratified (approved) by the HHS. In using the word "officially", I mean that there was never any public announcement of the report going through a review process by the HHS nor was any formal public input sought to comment on the Report nor has the HHS ever made a public announcement of the ratification of this document for use by its Department. Why was this not done?

    All that time, effort and expense that went into developing a Report and then it is not presented for comments/suggestions to the community that it was developed to help. If the HHS was satisfied with its own review of this Report, why was it never ratified?

    If this Report has not been ratified, why has the HHS allowed its agencies, such as the CDC and the NIH, to use this Report for developing programs and criteria for research?

    Did the HHS not like that the I.O.M. Report gave a strong recommendation as to the amount of funds needed to be allocated in order to address this serious biological illness?

    These are just some of questions that I believe the patient community should be asking.
     
    Last edited: Oct 3, 2017
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  7. A.B.

    A.B. Senior Member

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    It's worth mentioning that Jason attempted to identify the core symptoms of the illness and arrived at almost the same set of symptoms as the ones required by the IOM criteria:

    Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4443921/

    Fatigue, PEM, unrefreshing sleep, cognitive impairment or orthostatic intollerance are the symptoms required by the IOM criteria.
     
  8. A.B.

    A.B. Senior Member

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    The disagreement is about other aspects. I will write more about this when I get my brain function back.
     
  9. Nielk

    Nielk

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    Yes - because if one looks at the majority of studies done on CFS/Fukuda (the majority of studies are based on these parameters), one will come to the same conclusion.

    If one were to look at studies based on the CCC or on the ICC, they will see a different picture.
     
  10. Wally

    Wally Senior Member

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    This is what I am finding so frustrating to see the HHS play everyone like they are conducting a friendly puppet show around this Report. Pull the strings on the puppets that serve your purpose, but ignore the inconvenient truths in the Report. Correction - I am not just frustrated - I am mad and sick and tried of being lied to and manipulated by my government!

    Now let's rely on members of the I.O.M. panel to justify individual recommendations found in the Report. How convenient is it to not allow the public to critique the Report as a whole in any type of government sponsored public Forum. How nice for the HHS that they can let these distractions go on and avoid having to step up to the plate to take a position about this Report. I cry foul on how this whole I.O.M. contract and subsequent Report has been handled by my government.
     
    Last edited: Oct 3, 2017
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  11. Nielk

    Nielk

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    Also, the excuse that HHS gave for not using the International Consensus Criteria (ICC) was because it was new and inverted so they didn't know if the criteria would work.

    Yet, here they are fully adopting the IOM criteria. They already Revised the CDC website with the IOM criteria and preparing medical educational material with it.

    Even worse, they are simultaneously recommending it's use for research in the new consortia.

    This is unreal.
     
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  12. Hope123

    Hope123 Senior Member

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    Researchers and clinicians conduct research on theories, treatments, questionnaires, diagnostic tests, etc. that they originate all the time. Your argument would be similar as saying Jason cannot conduct research on the DePaul Symptom Questionnaire because he developed the Questionnaire.

    All scientific articles also require at least a financial conflict of interest disclosure and in this case, the conflict - ideological but not financial -- was declared so that readers can judge for themselves. In contrast, most researchers do not necessarily declare ideological conflicts (see PACE!) etc. they are researching but they will cite themselves often in the body of the article (as Jason and others do).
     
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  13. Nielk

    Nielk

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    It is not the same as saying that Jason cannot use his questionnaires.

    I'm not saying Chu cannot use IOM criteria if she were to care for patients.

    What I'm saying is that she should not be reviewing her own work.
     
  14. A.B.

    A.B. Senior Member

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    I have good news: she isn't reviewing her own work.
     
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  15. Nielk

    Nielk

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    She compare her work (the resulting Criteria) to other criteria.
     
  16. Wally

    Wally Senior Member

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  17. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    We need to find out how to diagnose PEM using objective criteria. That will change a lot, including the major flaw in SEID. Candidates right now include cytokines (the Light's research) and repeat CPET (Workwell). We need more verification though, especially specificity. I think we have enough sensitivity in tests.
     
  18. Nielk

    Nielk

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  19. viggster

    viggster Senior Member

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    The NIH is using CCC in its ongoing intramural study.
    From https://mecfs.ctss.nih.gov/faq.html

    7. How are the enrolled participants being evaluated for ME/CFS?
    The study team will provide information from the initial study visit for ME/CFS participants to the adjudication committee. The adjudication committee will then review the data and medical records to determine if the participant with ME/CFS can proceed to the exercise stress visit.

    8. Why is there an adjudication committee that determines which ME/CFS patients are eligible to participate in the exercise stress visit?
    An adjudication process ensures fairness and uniformity in the selection process.

    9. Who are members of the adjudication committee?
    Committee members are recognized experts in ME/CFS. The initial members include: Lucinda Bateman, Andy Kogolnik, Tony Komaroff, Benjamin Natelson, and Daniel Peterson. The chair of the adjudication panel is the Principal Investigator, Dr. Avindra Nath (http://irp.nih.gov/pi/avindra-nath).

    10. Are diagnostic criteria going to be used in the adjudication process?
    The adjudication committee will consider the 1994 Fukuda, 2003 Canadian Consensus criteria, and additional information collected during the initial study visit in the adjudication process.

    My note: This "additional information" collected during visit 1 includes a thorough evaluation for other diagnoses. E.g. The NIH docs evaluated me for degenerative muscle disorders but I didn't fit the bill (thankfully).
     
    Last edited: Oct 3, 2017
  20. Forbin

    Forbin Senior Member

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    In the 2015 Lipkin/Hornig cytokine study from Columbia, patients met both the Fukuda and the Canadian Consensus Criteria. I would suspect that, if the IOM criteria were indeed required, it wouldn't be impossible to find patients who also met the CCC or ICC. As I recall, the thing that stands out about the IOM criteria is that it does not exclude co-morbid conditions, but that doesn't mean that you have to include patients with co-morbid conditions in a research study.
     
    Last edited: Oct 3, 2017

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