Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey

The following comment was posted in the comments of the blog and MeBO Research website. The survey is about Olfactory Reference Syndrome (ORS), which is a diagnosis the psychiatric community has come up with for someone who believes he/she has odor, but the mental health community considers it to be all in the sufferer's mind, since the therapist doesn't detect the odor.

Think you smell bad?
Do others say you smell fine?
For a $10 gift card, take survey.
http://www.surveymonkey.com/ORSSurvey

(MGH OCD and Related Disorders Program)

Information from the survey

Why is this research study being done?
Very little is known about individuals with body odor concerns or Olfactory Reference Syndrome (ORS). Therefore, the goal of the present study is to learn more about the symptoms experienced by individuals with body odor concerns, past treatment experiences, and how the disorder may interfere with life. We hope that this information will help us to address diagnostic questions and treatment needs, and eventually improve the quality of care for people who suffer from perceived body odor concerns.

Who do I contact if I have questions about this research study?
The principal investigator for this study is Sabine Wilhelm, PhD. She can be reached at (617) 726-6766 any time between 8 am and 5 pm EST, Monday through Friday.

You may also call Dr. Jennifer Greenberg, the co-investigator, with any questions. She can be reached at (617) 726-5374 any time between 8 am and 5 pm, Monday through Friday.

MY REPLY EMAIL REGARDING ABOVE COMMENT WRITTEN IN THIS BLOG
by the Massachusetts General Hospital and Harvard Medical School

Obsessive Compulsive Disorder Clinic and Research Unit

Dear Drs. Wilhelm and Greenberg:

Thank you for taking interest in posting in my blog. I am encouraged that your organization is a “Research Unit” of the Harvard Medical School, and that you have reached out to us. I hope that others in this community assist you in understanding what it is like to live in any society with an above normal odor condition. In this email, I would like to present to you the widespread opinion of the body odor community as to how you can best help us, and how we almost unanimously, if not totally unanimously, about ORS. Basically, getting an ORS diagnosis and treatment is equally as painful as the discrimination we get from society.

I will post your comment along with this email response in my blog. I do look forward to receiving your reply to this email, which I will also post. Ultimately, my aim is to start a dialogue between us, and to encourage feedback from our community as well, so that we can resolve a great deal of misunderstanding that exists between the mental health field and body odor sufferers regarding the misdiagnosis of Olfactory Reference Syndrome. I hope this email clarifies how body odor sufferers feel about the diagnosis.


TOPICS ADDRESSED IN THIS EMAIL ARE THE FOLLOWING:

1. An Olfactory Reference Syndrome (ORS) diagnosis and treatment should be immediately suspended until further research is conducted to conclusively prove or disprove its validity. This diagnosis totally lacks any and all objective scientific basis as the sense of smell is extremely subjective, and the diagnosis is not based on any significant battery of odor-related tests that specifically targets the identification and count of odorous compounds in the body. Please note that without exception, all persons diagnosed with Trimethylaminuria (TMAU) has been previously told more than once by either a doctor or family member or both that they do not smell and that it is all in their minds. Yet, urine and blood tests substantiates that they do indeed have a genetic body odor condition, and as a result, have suffered through countless injurious social encounters.

The ORS diagnosis is not aimed at identifying the patient’s reality, but instead at creating a desired illusionary reality based on therapist's subjectivity.2. It is recommended that extensive research be carried out to question the validity of the ORS diagnosis by using especially trained service dogs to determine whether a person does manifest a specific type of body odor intermittently. For example, a person diagnosed with Trimethylaminuria (TMAU) would have a service dog that when prompted, would identify and notify the sufferer whether the odor of trimethylamine (TMA) is emitted at that particular time. This could also be extended to other odorous compounds, such as a rotten-egg odor (sulfur-type), fecal matter odor (skatole, indol), pungent odor (ammonia), etc., which when emitted by BO sufferers, adversely disrupts his or her daily social life.

3. Exchange of information: As a community, we are planning to carry out a Body Odor Webinar Series, in which scientists and medical doctors in the United States, the United Kingdom, and Ireland who have carried out significant scientific research on the genetic explanation for TMAU, FMO3 enzymes, and other BO causes, have agreed to participate. In these presentations, they will explain the causes and triggers of odorous conditions, such as genetic pathways, metabolic enzyme deficiency, hormonal influences, environmental influences including chemical sensitivities, diet, and microbial flora imbalance.

The only morally and ethically acceptable diagnosis and treatment is one that is based on scientific evidence through diagnostic testing, and there are no tests in the medical system that check for odorous compounds emitted through the skin, breath, or any other cleansing systems of the body, except TMAU only.Frequently, these conditions manifest themselves with an unpredictable intermittent odor, which may not always be present during medical examination, but may appear at the most inopportune moments. For additional information on the experts’ opinion, please see the interviews we have done with them already that are posted in this blog. Without exception, they recognize that sufferers do manifest intermittent body odor.

4. Injurious diagnosis: A diagnosis of Olfactory Reference Syndrome or any other related OCD diagnosis can be profoundly damaging to a person who suffers from intermittent body odor because the treatment for these conditions is geared toward denying the person their true reality and to instead force the person to lie to themselves even as the reality continues to replay itself throughout their lives. The only morally and ethically acceptable diagnosis and treatment is one that is based on scientific evidence through diagnostic testing, and there are no tests in the medical system that check for odorous compounds emitted through the skin, breath, or any other cleansing systems of the body, except TMAU only. Therefore, an ORS diagnosis is based strictly on extremely subjective grounds – the therapist’s own olfactory system. The ORS diagnosis is not aimed at identifying the patient’s reality, but instead at creating a desired illusionary reality based on therapist's subjectivity.

RESEARCH RECOMMENDATION:
Utilize specially trained service dogs to identify and notify a body odor subject when he or she begins to emit a particular odor. In the wide range of olfaction, we have the dogs in the hyperosmia category and to the opposite end of the spectrum, we have humans who may suffer from anosmia. In between these two, there is a wide range of olfactory range levels. It only stands to reason that ORS is an extremely unscientific diagnosis solely based on where in the olfactory spectrum the patient’s mental health practitioner falls. ORS should never be a viable diagnosis of the 21st century unless a trained service dog or a very highly sophisticated electronic equipment is used to measure the levels of all known odorous compounds that produce the type of odor a sufferer complains of DURING THE PRECISE MOMENT OF A FLARE-UP.

BENEFIT OF A RESEARCH STUDY: To carry out scientific evidence to support or disprove the controversial diagnosis of Olfactory Reference Syndrome and the other quasi-disorder diagnoses of Cacosmia, parosmia, phantosmia will promote mental health and the much needed treatment of sufferers. At the present time, there simply is no sufficient scientific evidence to support the current “mental health” practices of diagnosing ORS and the current treatment is primitive at best. Instead of pursuing the truth, the patient is taught to erase his experiences and to develop a habit of misinterpreting what has been expressed to him in society by those who complain about his odor.

It is the moral and ethical duty of the scientific community, the medical community, and the mental health community to not practice the use of this diagnosis and treatment until much more extensive research has been exhausted.This a very dangerous practice that deeply touches the basic psychological core of an individual who consequently becomes extremely mentally unstable, as he will feel that he is unable to discern truth from fiction in his life – and all this damage is caused without scientific evidence as the patient has not been tested for these odorous compounds! The therapist has no idea whether the person does emit an odor or not in a social setting, and the diagnosis is unfounded as it is without scientific evidence.

Each and every person in our community who has been diagnosed with TMAU will tell you that he or she too have suffered deep emotional injury promulgated by the mental health community and the medical community with an unfounded diagnosis of ORS and all its implications. It is the moral and ethical duty of the scientific community, the medical community, and the mental health community to not practice the use of this diagnosis and treatment until much more extensive research has been exhausted. On behalf of the international body odor and halitosis community, I implore you to pursue research in this area, and to stop the mental health community from further injuring its patients as a result of ignorant and unfounded diagnoses until such time that all research options have been exhausted.

Respectfully yours,

María de la Torre
Director
MEBO Research
maria.delatorre@meboresearch.com
786 228-6880