aimossy
Senior Member
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@ ember good point!!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Though it would be rather good I think to hear what it is you do want - not you specifically - by way of a 2013 CFS/ME Guideline for the USA even if the CCC forms the backbone of it.
Would I want to see only ME medical experts on the panel?
Not sure. I'd certainly like to see them in the majority and called to provide evidence alongside researchers. I'd certainly value their opinions highly and would want them to contribute to the recommendations, and certainly to endorse what is produced.
However, I'd also like some present who don't have experience of ME to ensure that the recommendations and operationalised 'guideline' reinforces that ME is real and distinct and can be diagnosed effectively.
We do need to be as certain as we can that other common diseases are able to be dismissed as not being 'CFS'. That alternate explanations for the presented symptoms can be recognised and I think input from non-ME-experts would be useful.
I mean how many times do we hear that doctors don't know what they are talking about due to their disbelief and/or unfamiliarity?
If some more general - but related disciplines - are present their opinions may help ensure what is produced is more capable of swaying ignorant doctors when it is published.
Do they need to be on the panel?
I suppose they could be called as non-contributors to review what is produced, but I think their endorsement of the recommendations could prove useful.
It might also depend on who they were. Hard really to interpret the reply in the email at the top of this thread - though I can certainly see why you have all responded as you have.
I'd like to see something produced that has run the gauntlet of many opinions: they are after some form of consensus after all (though you'll no doubt feel that word is open to interpretation - and rightly so).
At the end of the day, whatever is produced, will not please everyone in every respect. And you could say the same about the Canadian Consensus as well, which is after all yet another compromise of opinions, appropriate only until such time as the elusive biomarkers can be found, substantiated and applied.
@aimossy Lol to the 'stormy'
@justinreilly I think if we had more of an idea what it is the non-experts will do it might help, but I do think that ME or CFS especially in the US is in need of greater approval of any definition, than is occurring simply among those who claim to be most familiar with the disease.
It may also be part of the approval process of course. Other disciplines - represented by non-ME experts - may need to sign-off on the recommendations, but I would imagine they would be needed to contribute.
I do understand the idea that having non-experts taking part may further dilute what is hoped will be a 'tight' definition, and that you might feel for example that the NICE Guideline is too broad, and too indulgent of CBT, GET and Activity Management. Though it would be rather good I think to hear what it is you do want - not you specifically - by way of a 2013 CFS/ME Guideline for the USA even if the CCC forms the backbone of it.
Right. That's me. Off back to bed.
@aimossy Lol to the 'stormy'
@justinreilly I think if we had more of an idea what it is the non-experts will do it might help, but I do think that ME or CFS especially in the US is in need of greater approval of any definition, than is occurring simply among those who claim to be most familiar with the disease.
It may also be part of the approval process of course. Other disciplines - represented by non-ME experts - may need to sign-off on the recommendations, but I would imagine they would be needed to contribute.
I do understand the idea that having non-experts taking part may further dilute what is hoped will be a 'tight' definition, and that you might feel for example that the NICE Guideline is too broad, and too indulgent of CBT, GET and Activity Management. Though it would be rather good I think to hear what it is you do want - not you specifically - by way of a 2013 CFS/ME Guideline for the USA even if the CCC forms the backbone of it.
Right. That's me. Off back to bed.
Coverage of CFS within U.S. Medical Schools
Little is known about the extent to which chronic fatigue syndrome (CFS) is covered within medical schools in the United States (U.S.)
The current study is an exploration of the extent that CFS is covered in the areas of treatment, research, and curricula in U.S. Medical Schools.
Surveys were sent to personnel at 132 accredited U.S. medical schools and a total of 71 schools responded. The extent of coverage across the three domains was extremely limited.
Only 29.6% of schools met the clinical criterion, 28.2% met the curricula criterion, and 15% met the research criterion. Only four of the 71 (5.6%) responding schools met criteria for all three domains.
While the current study is preliminary, it points to significant gaps in the coverage of CFS among medical institutions, which is likely impacting the ability of physicians to fully acknowledge, understand, effectively treat, and find a cure for CFS.
The superstitious IOM staff is not qualified to define ME/CFS.
Would you undergo heart surgery in a hospital that lets a psychologist have a say in how to proceed during the operation?
No. Not to to have a say in the operation/surgery but yes in any problems I might have pre or post operation including coming to terms with life. At least I would like to have the option of having assistance on hand to help me come to terms with coping, and 'illness management'.
With ME we are not at the surgery stage - more's the pity!
superstitious? that's one i hadn't heard yet. Only non experts who won't step on cracks in the sidewalk are allowed on the panel? lets go with it.The superstitious IOM staff is not qualified to define ME/CFS.
Who does the IOM deem “capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community?” When did the clinical observation of experts in a field stop being objective?Only non experts who won't step on cracks in the sidewalk are allowed on the panel?
NOTICE: The project that is the subject of this report was approved by the
Governing Board of the National Research Council, whose members are drawn
from the councils of the National Academy of Sciences, the National Academy of
Engineering, and the Institute of Medicine. The members of the committee responsible
for the report were chosen for their special competences and with regard for
appropriate
balance.
This study was supported by Contract VA241-P-2024 between the National Academy
of Sciences and the Department of Veterans Affairs. Any opinions, findings,
conclusions, or recommendations expressed in this publication are those of the
authors and do not necessarily reflect the views of the organizations or agencies
that provided support for the project.
International Standard Book Number-13: 978-0-309-27802-7
International Standard Book Number-10: 0-309-27802-3
Additional copies of this report are available for sale from the National Academies
Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or
(202) 334-3313; Internet, http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page
at: www.iom.edu.
Copyright 2013 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost
all cultures and religions since the beginning of recorded history. The serpent
adopted as a logotype by the Institute of Medicine is a relief carving from ancient
Greece, now held by the Staatliche Museen in Berlin.
Suggested citation: IOM (Institute of Medicine). 2013. Gulf War and Health:
Treatment
for Chronic Multisymptom Illness. Washington, DC: The National
Academies Press.
This report has been reviewed in draft form by persons chosen for their
diverse perspectives and technical expertise in accordance with procedures
approved by the National Research Council’s Report Review Committee. The
purpose of this independent review is to provide candid and critical comments
that will assist the institution in making its published report as sound as possible
and to ensure that the report meets institutional standards of objectivity,
evidence, and responsiveness to the study charge. The review comments and
draft manuscript remain confidential to protect the integrity of the deliberative
process. We thank the following for their review of the report:...
[list of names]
Although the reviewers listed above have provided many constructive
comments and suggestions, they were not asked to endorse the conclusions
or recommendations, nor did they see the final draft of the report before its
release. The review of the report was overseen by Lynn R. Goldman, Dean,
the George Washington University School of Public Health and Health
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Fund. Appointed by the National Research Council and the Institute of
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Responsibility for the final content of the report rests entirely with
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@Firestormm - is this a recommendation for CBT?
I don't think that the medical community as a whole believe ME clinicians and experts.....I think the only thing that will turn that around is very compelling research that is right in their face, then they will respect what ME clinicians/experts say after the fact. I think that is horrible but this is what Im beginning to see after 5mths of researching on the net. could someone tell me if my perception of that is off and why if it is.
No. Not to to have a say in the operation/surgery but yes in any problems I might have pre or post operation including coming to terms with life. At least I would like to have the option of having assistance on hand to help me come to terms with coping, and 'illness management'.
The IOM staff are working to convene a committee that includes ME/CFS experts, as well as those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community.