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The third (second open) IOM meeting May 5th

Denise

Senior Member
Messages
1,095
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Gawd! Looks like Megan Arroll has a book coming out in July. I'm sure we can't wait.
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17 Jul 2014
Chronic Fatigue Syndrome [Paperback]

Arroll Megan

http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Arroll-Megan/dp/1847093000/ref=sr_1_fkmr0_1?ie=UTF8&qid=1397924314&sr=8-1-fkmr0&keywords=megan carroll chronic fatigue syndrome

The ISBN for Chronic Fatigue Syndrome is 9781847093004.
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Good grief.
I am glad you alerted us to this Wildcat.
I'll put this book on my wish list, NOT!
 
Messages
1,446
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The question remains:

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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 ?

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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.
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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/

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

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1,446
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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.
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That would open up a Massive can of worms.

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



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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




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).

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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’. “


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SOC

Senior Member
Messages
7,849
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The question remains:

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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 ?
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:
 

Nielk

Senior Member
Messages
6,970
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:

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?
 
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1,446
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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.
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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.

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caledonia

Senior Member
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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.
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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.

What kind of hot water? Is this something we can exploit?
 
Messages
15,786
What kind of hot water? Is this something we can exploit?
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.
 

SOC

Senior Member
Messages
7,849
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?
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.
 

jspotila

Senior Member
Messages
1,099
If I've got it right - only 1/4 of of the meeting is what they call 'open', It's a 2 day meeting, and we know the agenda for a 1/2 day. We don't know if Megan Arroll is gone or if she got moved to a closed part of the meeting.

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/
 
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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.
 

Denise

Senior Member
Messages
1,095
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.

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:

expand.gif
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



expand.gif
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
 

jspotila

Senior Member
Messages
1,099
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.

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.
 
Messages
93
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?
 

jspotila

Senior Member
Messages
1,099
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?

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.
 
Messages
93
Thanks for the enlightening responses. Seems to be about owning/ taking a particular territory while maintaining the right to disownment. Ahhhhhh, politics.