1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

The third (second open) IOM meeting May 5th

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

  1. Wildcat

    Wildcat Senior Member

    Messages:
    675
    Likes:
    652
  2. Denise

    Denise Senior Member

    Messages:
    170
    Likes:
    233
    Good grief.
    I am glad you alerted us to this Wildcat.
    I'll put this book on my wish list, NOT!
    Wildcat likes this.
  3. Wildcat

    Wildcat Senior Member

    Messages:
    675
    Likes:
    652
    .
    The question remains:

    .
    Why on earth did the IOM Committee even consider giving Megan Arroll a slot to address the Committee on May 5th in the first place, on a subject (Neurocognitive impairments in ME/CFS) which Arroll is not even specifically qualified in, or experienced in ?

    .
    Neuro-cognitive dysfunction is such an important part of ME that one would have thought the IOM would have sought out an actual expert on the subject.
    .

    Instead, the IOM asked Arroll, who is on record describing ME as “a maladaptive stress response” and “Disease of the soul—crises of meaning”.

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

    .
    How on earth had the IOM Committee even heard of Megan Arroll in the first place?

    .
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,041
    Likes:
    8,403
    Amersfoort, Netherlands
    @Wildcat - please don't underline the entire post. I can't read it.
    SOC, Wildcat and Bob like this.
  5. Wildcat

    Wildcat Senior Member

    Messages:
    675
    Likes:
    652
    .

    Sorry Valentjn. I'm struggling as to how to highlight the relevent parts of long posts and quotes.
    I will refrain from underlining so much in future. Thanks for pointing it out.
    xx
    beaker, SOC and Valentijn like this.
  6. Wildcat

    Wildcat Senior Member

    Messages:
    675
    Likes:
    652
    .

    By inviting Arroll to submit evidence to an HHS convened IOM Meeting on creating a new Case Definition of a WHO classified Neurological disease, the IOM/HSS could be seen as opening themselves up to apparently considering Neuro Linguistic Programming (NLP as defined by Bandler and Grinder) as relevant in the process of the HHS/IOM creating new disease Case Definitions in the United States.
    .

    That would open up a Massive can of worms.

    .
    Please see the Arroll/Duschinsky ‘ME/CFS’ Case Study posted below.



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

    .

    ‘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




    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).

    .

    A Neuro-linguistic Programming-informed psychological ...

    www.anlp.org/files/abstracts_11_206.pdf‎


    by M Arroll - ‎Related articles


    A Neuro-linguistic Programming-informed psychological approach to the treatment of Myalgic. Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A case study and initial ... In a Clinic-wide study investigating the psychological, nutritional and ... Over the first three months of treatment S went from bed-bound to enjoying ...


    To begin, individuals are assessed on a number of characteristics that have been found to be important in the predisposition and maintenance of ME/CFS, such as a drive towards action and achievement…. trauma (this can be high- or low-grade trauma) all of which can lead to anxiety and heightened arousal, culminating in a chronic activation of stress loop.

    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’. “


    .
    Last edited: Apr 24, 2014
    Peter Kemp and Valentijn like this.
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,282
    Likes:
    6,235
    USA
    My guess is she volunteered herself. Identified herself as an expert and the author of a brand new book about ME/CFS (and therefore "obviously" au courant of the the latest knowledge). Probably hoping it will help her book sales in the US to be able to say she spoke at the IOM committee on ME/CFS. Someone at IOM probably thought it would be interesting to have a "celebrity" author :rolleyes:
  8. Nielk

    Nielk

    Messages:
    5,149
    Likes:
    4,860
    Queens, NY
    What does this say about the caliber of the "well respected" IOM? This is the best they can do? I think it is pretty pathetic and we are to entrust them with with the future of our health?
    WillowJ, Peter Kemp, beaker and 2 others like this.
  9. Wildcat

    Wildcat Senior Member

    Messages:
    675
    Likes:
    652
    .
    There are dozens (if not hundreds) of books about 'CFS' with 'Chronic Fatigue Syndrome' in the title. The book has not been publicised at all, I only came across it by accident.

    And yes, the choice of Arroll to address the IOM is pathetic. Its made a laughing stock of the IOM; not enhanced the credibility of their judgement at all.
    .
    And the implication that NLP could have any part in evidence submitted to the IOM re creating a Case Definition of a WHO Classified disease is.... well, the IOM could get themselves into some very hot water that way.
    The IOM surely doesn't want to set that kind of precedent.

    .


    .
  10. caledonia

    caledonia

    Messages:
    2,798
    Likes:
    1,386
    Cincinnati, OH, USA
    What kind of hot water? Is this something we can exploit?
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,041
    Likes:
    8,403
    Amersfoort, Netherlands
    NLP and EFT (used by the clinic and researched by Arroll) are both widely discredited for any use. They also get into the new-age spirituality/mysticism-to-cure-disease realm somewhat.

    It's extremely unscientific, and even anti-science. For the IOM to listen to such a thing would make them look like a bunch of idiots who can't tell the difference between hard science from respectable researchers, and mumbo-jumbo from a fraudulent quack.
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,282
    Likes:
    6,235
    USA
    It says they're a bureaucracy like most other big organizations.

    Most likely admin people and low level tech people (maybe even interns) make conference-type arrangements. How are they supposed to know all ME/CFS researchers are not the same? Hopefully actual medical members of the committee also objected to being presented with quackery. Hopefully. ;)

    And yes, I wish this wasn't the way bureaucracies work. Nevertheless, we have to work with what's there. Wishing (or pretending) it's something it's not doesn't move us forward.
  13. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    586
    My understanding is that any presentations by non-IOM committee members must be conducted in public. I could be wrong, but I don't think Arroll (or anyone else) can address them during closed session.

    I submitted a comment to IOM today addressing the point raised by others in this thread: that if Arroll had addressed the committee, it would have opened the doors to poor science, and worse. ALL panels, including IOM and P2P, must be vigilant about this.

    If you feel strongly about the Dr. Arroll's tentative scheduling and subsequent withdrawal, submit a comment to IOM. If you feel strongly about the questions IOM is asking at this meeting, submit a comment to IOM.

    http://www.occupycfs.com/2014/04/08/dont-silence-yourself/
    WillowJ, beaker, Wildcat and 6 others like this.
  14. Peter Kemp

    Peter Kemp

    Messages:
    27
    Likes:
    125
    That is an interesting point jspotila, though I also understood that there were going to be some private sessions; though maybe this just means sessions where the audience may not comment or ask questions. If it turns out that they do have some private sessions, then perhaps a Freedom of Information request would produce the transcripts or minutes.
    Valentijn likes this.
  15. Denise

    Denise Senior Member

    Messages:
    170
    Likes:
    233
    I may well be wrong but I am not sure a FOIA applies to IOM since it is not a government agency.

    This is what I could find about what has transpired in the non-public sessions of the (Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) meetings:

    [​IMG] Closed Session Summary Posted After the Meeting

    The following committee members were present at the closed sessions of the meeting:
    1. Ellen Clayton (chair)
    2. Lucinda Bateman
    3. Lily Chu
    4. Charles Cleeland
    5. Ronald Davis
    6. Betty Diamond
    7. Theodore Ganiats
    8. Betsy Keller
    9. Nancy Klimas
    10. A. Martin Lerner
    11. Cynthia Mulrow
    12. Peter Rowe


    The following topics were discussed in the closed sessions:
    1. National Academies policies, procedures, and study process
    2. Bias and conflict of interest discussion
    3. The committee's composition and balance, including public feedback
    4. Scope of study, Statement of Task, and initial work plan

    The following materials (written documents) were made available to the committee in the closed sessions:
    1. Meeting agenda
    2. Committee roster
    3. Study timeline
    4. Statement of Task
    5. Relevant literature
    6. Briefing materials
    7. Public comments received via email through 01/22/14

    Date of posting of Closed Session Summary: February 3, 2014

    http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=7062&MeetingNo=1



    [​IMG] Closed Session Summary Posted After the Meeting

    The following committee members were present at the closed sessions of the meeting:
    1. Ellen Clayton (Chair)
    2. Lucinda Bateman
    3. Lily Chu
    4. Charles Cleeland
    5. Ronald Davis
    6. Betty Diamond
    7. Theodore Ganiats
    8. Betsy Keller
    9. Nancy Klimas
    10. A. Martin Lerner
    11. Cynthia Mulrow
    12. Benjamin Natelson
    13. Peter Rowe
    14. Michael Shelanski

    The following topics were discussed in the closed sessions:
    1. Bias and conflict of interest discussion
    2. Statement of Task
    3. Review of literature
    4. Study Approach
    5. Report outline

    The following materials (written documents) were made available to the committee in the closed sessions:
    1. Meeting agenda
    2. Statement of Task
    3. Relevant literature
    4. Briefing materials


    Date of posting of Closed Session Summary: March 12, 2014

    http://www8.nationalacademies.org/cp/meetingview.aspx?MeetingID=7149&MeetingNo=2
    Peter Kemp, beaker, Valentijn and 3 others like this.
  16. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    586
    Denise is correct. FOIA does not apply to IOM. By design, the IOM committee meets in closed session to promote free discussion. The material Denise posted is as much as we can get about what happens in those closed sessions.

    Documents submitted to IOM from outside the panel - including us and HHS agencies - goes into the Public Access File, so we can get access to all those documents.
    Peter Kemp, Valentijn and SOC like this.
  17. Starfive

    Starfive

    Messages:
    65
    Likes:
    36
    I asked about transcripts and they, the IOM, said they do not transcribe he meetings. Hence no transcripts. I do not really understand why. Does anyone know how or even if they are recording the sessions? Don't they need to be accountable to the government agency that hired them?
  18. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,041
    Likes:
    8,403
    Amersfoort, Netherlands
    HHS doesn't want the IOM to be accountable to them. Then HHS can dodge any blame when the IOM creates guidelines that harm and kill people. That's the whole point to outsourcing projects like these.
    biophile, Wildcat and Nielk like this.
  19. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    586
    I don't know if they are recording the closed door sessions. The open sessions are videoed and archived.

    The reasoning behind having these closed door sessions is to encourage open discussion among the members. The final report is the public record of the whole process, and the panel is accountable for that final product. Those reports are usually quite long, and include references, a description of analysis, etc. I assume the idea is that the final consensus is public, and so the blow by blow discussions/arguments need not be.
    Wildcat and SOC like this.
  20. Starfive

    Starfive

    Messages:
    65
    Likes:
    36
    Thanks for the enlightening responses. Seems to be about owning/ taking a particular territory while maintaining the right to disownment. Ahhhhhh, politics.

See more popular forum discussions.

Share This Page