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The third (second open) IOM meeting May 5th

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 31, 2014.

  1. Peter Kemp

    Peter Kemp

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    In regards to why NLP might get the NIH into difficulties, this 2012 systematic review of NLP effects on health outcomes: "Conclusion
    There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather than robust evidence of no effect. There is currently insufficient evidence to support the allocation of NHS resources to NLP activities outside of research purposes."

    After 40 years of NLP, for 'insufficient evidence' you can read 'substantial evidence that it makes no difference to outcomes'. This is because of the 5 clinical trials that the authors considered worth including, only one showed an effect. Which in turn means that concerted efforts to produce an effect failed 80% of the time even after decades of practice and refinement.
    biophile, taniaaust1, WillowJ and 4 others like this.
  2. WillowJ

    WillowJ Senior Member

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    See, we have this fabulous tool we call "the internet". There are even speedy data retrieval systems called "search engines".

    It's not difficult to verify a proposed speaker's credentials, and I would imagine that would fall within the responsibility of someone at IOM.
    jspotila, Wildcat and Nielk like this.
  3. SOC

    SOC Moderator and Senior Member

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    Yes. If one has no knowledge of the controversy surrounding ME/CFS, Arroll looks superficially like a good candidate -- worked and published extensively on CFS, has a brand new book out on the topic. An internet search would suggest (to the inexperienced eye) that she's a fine person to speak before the IOM.

    I'm not excusing the organizer's failure, just explaining it. :) I wish they had done better, too, but I'm not surprised some flunky thought Arroll was a good candidate. I'm just glad somebody (us? Panel members?) caught the screw-up and got it fixed.
    jspotila, Snowdrop and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Me too. Writing angry letters is exhausting :sleep:
    rosie26 and Bob like this.
  5. WillowJ

    WillowJ Senior Member

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    I'm happy we got it fixed, too, but other diseases including cancer have illogical people--with doctorates even--advocating quack treatments and cures.

    Here is one with a nice website and impressive affiliations:
    http://kelleyshealthywater.wordpress.com/science/dr-shinya-kangen-water/
    This is where he directly claims Kangen water cures cancer:
    http://www.h2ofinest.com/testimonials.htm

    They don't need to know the peculiar circumstances of ME/CFS politics to know there are quacks around, even quacks with impressive websites and the trappings of reputability. Knowing this or having the responsibility to know this, IOM had responsibility to assign someone who was able to vet people properly.

    Fortunately they did the right thing about this speaker when it was called to their attention, but will they do the right thing when it comes to evaluating the literature? (Remember, they put themselves in as chairperson.)

    It's probable we need to tell them sometimes quacks, especially those interested in nonpharmacological psychological therapies, may publish RCTs with horribly bad methods, and prestigious journals may publish them and pretend they've had thorough peer review.
    Last edited: Apr 27, 2014
    alex3619, Roy S, taniaaust1 and 3 others like this.
  6. SOC

    SOC Moderator and Senior Member

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    Couldn't agree with you more. :)
    Last edited: Apr 27, 2014
    WillowJ likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    At least we know now what we are thinking.
    ...............

    offtopic but this is so interesting Im going to comment. I noticed a "Peter Kemp" liked your post. Very interesting, Im going to message him to try to find out if he's related to me.

    ME/CFS runs in my family down throu my grandmother thou she's only got FM/ IBS/sleep issues, 4 of her 17 grandchildren myself included have ME/CFS. Her maiden name is Kemp. Maybe this has been passed in my family before my grandmother?.. its a long shot but maybe Peter Kemp is clue to me finding out more about the genetic link in my family to ME/CFS and being able to trace it back further.. We need more genetic studies and serious studies but what do we get.. ridiculous things like NLP being considered for us!

    Im not at all surprised at how the IOM stuff is going, too many of them dont know enough to be trying to do all this even if they were trying hard to do a good job at what they have been engaged to do.
    Wildcat likes this.
  8. Wildcat

    Wildcat Senior Member

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    Hi taniaaust1,
    my point (not very well explained at the time) is that the IOM (and HHS) could be seen as setting a precedent for acceptance of Neurolinguistic Programming and Enneagram personality typing as part of the process of creating disease definitions in the US for WHO classified diseases, and in Health Policy per se. ie: “therapists utilised NLP techniques ….to retrain the nervous system..”


    Arroll and (OHC NLP Practitioner) Anna Duschinsky state that NLP can "retrain the nervous system".
    Arroll and Alex Howard make it clear that they use Enneagram Personality Typing to create what they believe are
    'ME Subtypes'.
    .
    See Wildcat’s Posts 166, 151 and 137.


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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    ‘A Neuro-linguistic Programming-informed psychological approach to the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A case study and initial findings from a longitudinal investigation’
    Authors: Megan Arroll and Anna Duschinsky
    .

    In which Megan Arroll and NLP Practitioner Anna Duschinsky wrote:
    .
    ‘….After these patterns are identified, trained therapists utilised NLP techniques such as the pattern break/anchoring method to retrain the nervous system out of its hyper-alert state and into a calmer, more present and more empowered one which enables activity management without relapse or‘payback’.”

    .
    Prominent in the References of this Megan Arroll and Anna Duschinsky ‘ME Case Study….’ are the Neuro Linguistic Programming (NLP) inventors’ original textbooks:

    Richard Bandler and John Grinder: ‘The Structure of Magic Volume 1 (1975).

    Connirae Andreas ‘Core Transformation: Reaching the Wellspring Within’ (1994).

    Robert Dilts: ‘Beliefs: Pathways to Health and Well-being’. (1990).
    .
    https://www.google.co.uk/#q=A Neuro-linguistic Programming-informed psychological approach to the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A case study and initial findings from a longitudinal investigation


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    .


    ‘The Application of Integral Medicine in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’

    Alex Howard and Megan Arroll 2011

    http://www.freedomfromme.co.uk/publ...ic-encephalomyelitischronic-fatigue-syndrome/

    .Page 30
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    we have developed a clear model of what we believe some of the UL factors involved in ME/CFS to be, partly based on certain personality types within the Enneagram model.”
    .
    .
    Last edited: Apr 28, 2014
  9. taniaaust1

    taniaaust1 Senior Member

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    Ah now I understand what you were trying to say, I did miss that. OMG that would be really bad. You've just made me realise that I hadnt realised till now just how bad the defintion could end up being. I'd been more worried about GET and CBT ending up as recommended treatments for ME/CFS being lumped together. Id thought that the worst they could do is to keep lumping the illnesses together and use a typical CFS definition.. how wrong are I, they could throw in a heap of new crap with it too.

    The GET and CBT never did too great so maybe we are about to be lead onto a new useless detour, another misreprestention of our illness which makes it sound like the illness is all in our heads
    Last edited: Apr 28, 2014
    ahimsa and Wildcat like this.
  10. Wildcat

    Wildcat Senior Member

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    My main point is that the HHS will not accept NLP (Neuro Linguistic Programming), or Enneagram Personality Typing as part of US Health Policy - not in a million years.

    But the IOM Committee wandered obliviously into the possibility of setting a precedent for IOM/HHS acceptance of NLP and Enneagram Personality Typing, by inviting Megan Arroll to give evidence on Cognitive Function in ME to the IOM Committee.

    Arroll is on record as defining ME as a "maladaptive stress disorder" and subtypes the patients according to Enneagram Models. Arrol's published work with the Optimum Health Clinic (OHC) reiterates her hypothesis of 'curing' the supposed "maladaptive stress disorder" by using Neuro Linguistic Programming to supposedly "retrain the nervous system".
    .
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    Surely the IOM does not want to become involved in GI Gurdjieff's and PD Ouspensky's 'Fourth Way' Esoteric Teachings, via current 'Pop Psychology' Enneagram ideology!
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    Last edited: Apr 28, 2014
    Valentijn likes this.
  11. Wildcat

    Wildcat Senior Member

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    The origin of Enneagram Personality Typing:
    .

    Ouspensky writing on The Enneagram:
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    "All knowledge can be included in the enneagram and with the help of the enneagram it can be interpreted. And in this connection only what a man is able to put into the enneagram does he actually know, that is, understand. What he cannot put into the enneagram makes books and libraries entirely unnecessary. Everything can be included and read in the enneagram". --

    P.D. Ouspensky, 'In Search of the miraculous. Fragments of an Unknown Teaching' 1949.
    .
    .~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


    .

    ‘Background to the Enneagram’


    ‘Where did the idea of the three Centers come from?’
    The focus of the Enneagram work involving the three traditional Centers originated in a more ancient and comprehensive understanding of human nature that sees the three Centers as only the beginning step of a greater process.

    Gurdjieff taught that everyone's spiritual progress or level of attainment could be evaluated on a seven-gradient scale. He called these "Man Number 1" through "Man Number 7."

    The first three "men" are representatives of "normal," personality-based human consciousness and correspond to the types in the three Triads.

    (Remember, however, that Gurdjieff did not use types in conjunction with the Enneagram symbol. He did recognize that there are three kinds of men—instinct-based, feeling-based, and thinking-based, categories that are congruent with the concept of the three Triads.

    Oscar Ichazo was the first to correlate the nine types with the Enneagram.

    After the first three types of men, Gurdjieff said that there were four more which represent different levels of attainment possible for human beings, and that these mark a complete departure from the fixated identity of Man Numbers 1, 2, and 3.

    https://www.enneagraminstitute.com/articles/NArtEvCon.asp
    .
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    .
    Last edited: Apr 28, 2014
    Cheshire likes this.
  12. ukxmrv

    ukxmrv Senior Member

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    Maybe Meghan Aaroll will return to her acting and modelling career instead. Stage name is Meg Oakley.

    Just f.y.i. only, - there's nothing wrong with acting/modelling etc

    http://www.realitycheckmanagement.com/model.php?id=982

    I'm not sure if film this is her (having met her the one above certainly looks like her)

    "An unknown biological phenomenon has enabled the dead to re-animate with a hunger for human flesh. In the day people gather supplies and get ready to defend themselves from the night time attacks. Seeking safety from the horror that has taken over the.."

    http://www.imdb.com/video/withoutabox/vi4189914393?ref_=nm_rvd_vi_1
    Last edited: Apr 28, 2014
    Wildcat likes this.
  13. Wildcat

    Wildcat Senior Member

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    Is Megan Arroll running like crazy and going "Aaaargh" in the film 'Alone with the Dead' because there are hoardes of well informed scary ME sufferers chasing her, who are quoting the Canadian Consensus Criteria (CCC) and the ICC, and the VO2Max testing ????
    .
    http://www.imdb.com/video/withoutabox/vi4189914393?ref_=nm_rvd_vi_1
    .

    I don't blame anyone for trying to make a career in acting. Damn good luck to them is what I say (having known so many aspiring good actors over decades).
    .
    .

    But Crikey! Megan Arroll's film 'Alone with the Dead' could eventually become a Horror Classic due to its sheer awfulness (a bit like 'Ed Wood', but not so classy)
    .


    .
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    Last edited: Apr 28, 2014
  14. SOC

    SOC Moderator and Senior Member

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    Maybe that explains why she thinks she knows something about ME/CFS. ;)
    Wildcat likes this.
  15. Nielk

    Nielk

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    To join the action of fighting the IOM, please sign in to the thunderclap campaign here. There are 5 more days left to this campaign.
  16. Denise

    Denise Senior Member

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    IOM Meeting Monday May 5th

    The 3rd meeting for the IOM Diagnostic Criteria for ME/CFS project is on Monday May 5th.

    Location: National Academies of Science Building 2101 Constitution Ave NW, Washington, DC 20418 (This is a different location than the January meeting.)

    Time: 1pm- 5:30pm (the FAQs list it as ending earlier but the agenda lists the meeting as lasting until 5:30).


    Webcast link: http://www.iom.edu/Activities/Disea...elitisChronicFatigueSyndrome/2014-MAY-05.aspx


    Agenda link: http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Open Session Agenda_04 17 14.pdf

    Additional FAQs: http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx



    Remember - at any time during the project you can submit comments to the committee. Send comments to: mecfs@nas.edu

    It might be worth referencing IOM MECFS Study in the subject line All comments become part of the Public Access File.
    Wildcat, Firestormm and Kati like this.
  17. Nielk

    Nielk

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    The open webcasted meeting today starts at 1pm (est). You can watch it here.
    SOC likes this.
  18. Nielk

    Nielk

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    Anyone here watching/listening?
    ukxmrv likes this.
  19. Kina

    Kina Moderation Team Lead

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    @Nielk -- I am watching and listening.
    Valentijn, Wildcat and Nielk like this.
  20. Nielk

    Nielk

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    I'm struggling with it bc I'm in a crash. The first part with the panel was frustrating to watch.
    Wildcat likes this.

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