THE POWER OF PARTICIPATION IN SURVEY STUDIES

THE POWER OF SUFFERER PARTICIPATION
IN SURVEY STUDIES

On January 11, 2011, the American Psychiatric Association revised and updated the DSM-5 Development category of Olfactory Reference Syndrome, as noted on their website. See article, "DSM-5: What's In, What's Out". This online page was copyrighted in 2012 with these latest revisions. The most significant highlights of these changes are the following declarations:

The preoccupations are not restricted to the symptoms of another mental disorder (e.g., the delusions of Schizophrenia or another Psychotic Disorder)...
There appears to be some overlap with delusional disorder, social phobia, body dysmorphic disorder, OCD, and hypochondriasis, but ORS appears to have important differences from all of these disorders.
ORS’s current classification is problematic, as this syndrome appears to characterize a distinct and suffering group of people who may be misdiagnosed or unsuccessfully treated because ORS is not clearly identified in DSM...

Including ORS in an Appendix would potentially stimulate further systematic research, using specified diagnostic criteria.

2012 American Psychiatric Association

Because some members of our community stepped up to the plate to fill out the survey...we not only brought about significant changes to the way sufferers are now diagnosed...

I wrote a post in this blog only a few days before this APA website was updated expressing my profound pride in our community for having been instrumental in bringing about these changes. Because some members of our community stepped up to the plate to fill out the survey we were invited to participate in by Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School, we not only brought about significant changes to the way sufferers are now diagnosed, but we actually tapped into the conscience of these experts to assist us in stimulating further systematic research, as noted above. All this change with only the participation of a very small percentage of our community.

...but we actually tapped into the conscience of these experts to assist us in "[to] stimulate further systematic research."

Imagine what we could do with mass participation from all sufferers in our international community! We have the wherewithal to make changes that will change our lives! We just need to say,

"yes, I will"

when the opportunity to participates knocks on our door.

MEBO Research is organizing a series of survey-based research studies that we plan to use to "potentially stimulate further systematic research," as stated on the DSM-5 Classification, into not only the psychosocial quality of life these conditions bring about, but also into the physiological causes and treatment of malodor conditions.

In an effort to support our upcoming testing and research programs, MEBO is currently going to great lengths to set up the required privacy protection of participants by establishing an Institutional Review Board (IRB), also known as an Independent Ethics Committee (IEC), or Ethical Review Board (ERB), that will be formally designated to approve, monitor, and review biomedical and behavioral research involving humans. We are also in consultation with a HIPAA attorney, (aka solicitor in UK) to assure that we will have taken the proper legal measures to ensure the protection of the study participants. See the Health Insurance Portability and Accountability Act (HIPAA) as explained by the U.S. Department of Health & Human Services.

So all sufferers from around the world need to ask themselves, do I want to remain a helpless victim, or do I want to empower myself to change the course of my life? Could I be a part of the solution for myself, my children, and their children, so that no one else will ever have to suffer as all persons with this condition have suffered throughout history.

More information about MEBO's survery studies will be forthcoming very soon. We hope to make a difference. Please stay tuned.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
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