[mpdela]

Here is my reply to Dr. Jennifer L. Greenberg:

Dear Dr. Greenberg,

I am so encouraged by your email. I will post it in my blog and in the forums to encourage all to give you feedback. Thank you so very much for your very compassionate and understanding position. Yes, we all suffer at a very deep level for years on end, with no hope in sight. I am certain that with better medical diagnosis of the causes of odor, we would be able to keep our mental and emotional focus in check, but all this uncertainty only triggers the most torturous and tormenting fears and totally disrupts not only our social life but also our ability to maintain employment, many college graduates give up and abandon their careers as the odor is a major obstacle, and even worse, some bright and inspired college students drop out because they can't stand the verbal attacks from not only classmates but even some professors.

Again, THANK YOU, for looking in our direction. If there is anything I can help you with in your studies, please don't hesitate to let me know. We are all so hopeful in that you would seek to understand our emotional/mental state and perhaps write an article or two in the professional journals to explain it to the rest of the mental health community???

Warmest Regards,


María de la Torre
Director
MEBO Research
http://www.bloodbornebodyodorandhalitosis.com/
786 228-6880

P.S. I leave you with a quote from one of our posters:

Hi TMAU sufferers
I was diagnosed in 2005 after 20 odd years of not knowing what the cause was.It took a long time for me to pluck up the courage to seek help, though at the time GP was unhelpful as he thought it was all in my head and I was just paranoid.
I was in a relationship for 20yrs and my partner was unable to smell any offensive odour and by the way neither can I, which is frustrating and therefore difficult to establish if anything ie food stress sweating makes the condition worse.
I did eat fish last time about 20 years ago and I could smell it in my nostrils if I took a hard short breath through my nose and my father did comment that he could smell fishy odour.No surprise I didn't eat fish again apart from once testing if it happened again and the smell was not present in my nose.
I think it is very different for each individual
The only comments I have ever had are when I have been at work like in my presence, What's that smell? to aftershave being sprayed on me and a wash bag being thrown at me.
It makes you feel embarassed, ashamed, angry,paranoid,frustrated and you just want to return to your home and not go out again.
I do think that my condition is not as bad as other TMAU sufferers and I am able to still be employed as my job involves travel and I work with different people almost all the time and not in an office environment with the same people
It is a struggle and I am always on my guard and only truely relax when I'm at home.
The biggest relief for me was finding out that I wasn't going mad and just paranoid and that I do have a metabolic disorder.
Hopefully I will get to chat to you at some stage and thank you for reading my story lots more to say but I think enough for now.

Hugs

[vilenin89]

Just saw a new internist (GP) today we talked and speculated with me for a good 45 minutes, sent you an email Maria. I thought that response was quite heartening.

[William]

Maria, I'm sending lot's and lot's of hugs your way! You're totally awesome! You're most definitely a fighter. I feel so ashamed of myself for caving in and giving up, while you, Arun and others keep plugging away regardless! Now that's determination! Thanks Maria for all of your hard work. You're truly an inspiration for all of us. I'm going to take the survey and will most definitely contact them. It's like a dream come true to have actual doctors who are interested enough to conduct a survey about people like us! This is exciting! Thanks again Maria!

[mpdela]

You're welcome, William! I'm glad this has been heartening for you and vilenin as well.

Up to now, we have not had the slightest gleam of hope that the mental health community would ever be able to help us unless we had a positive TMAU test in our hands. Otherwise, they would jump at the Olfactory Reference Syndrome diagnosis. I know very well that those testing positive for TMAU could benefit tremendously from counseling with a good therapist, but those who don't have a positive diagnosis and who live in limbo have that additional disadvantage, and the mental health community is not around to make sense of this confusion, much less to help us.

Well, I'm so glad that Drs. Greenberg and Wihelm have looked in our direction and have immediately understood where we're at and now want to research us! The fact that they are from such a renown institution, Harvard School of Medicine, represents that they can do much to promote awareness of our emotional/mental state to the rest of the mental health community so that any and all sufferers can someday be provided with the proper mental health treatment. I am so excited about this turn of events.

I just wrote to Dr. Greenberg and gave her the link to our anthology that we wrote back in 2008, http://4127860831928981480-a-1802744...attredirects=0 since she expressed interest in understanding our condition. I told her that I particularly like the poem on page 78 by Jessica F.M. entitled, 'YOU CONVINCED ME', and the poem on page 81, 'DO YOU REMEMBER ME?' Another poem I love starts on page 89 by Sonya McClinton entitled, 'DO YOU SEE ME'. These poems and others represent the metamorphosis we went through as we continued to pour our hearts out in this anthology. We began to transform into our real selves even as we were with the same odor.

I'm glad you are inspired and uplifted, William. I am too.

Have a great night,

María

[mpdela]

Hi everyone,

btw, talking about sufferers and experts uniting, so far, Drs. John Cashman, Paul Fennessey, George Preti, Eileen Treacy (from Ireland), and Irene Gabashvili have confirmed that they will do a presentation with a question and answer session afterwards on our International Body Odor Webinar Series that we are organizing for this Spring/Summer after our Nashville meetup. We are still waiting for the final OK from Drs. Elizabeth Shephard and Ian Phillips (from the UK) who had committed to participate in this conference when it was part of the Nashville meet-up, but now we just need to confirm that they will instead participate in the webinar series. That's seven experts from three different countries! I never dreamed that this would come true so quickly. Eventually, we'll begin to invite more experts in FMO3, TMAU, genetics, dietetics, mental health, and other related fields as time goes on.

We are still working on the platform for the webinar. It hasn't been decided yet, but it will very likely be gotowebinar.com, which is one of the best known and respected webinar programs. This program will allow up to 1,000 attendees from anywhere in the world, so all will be invited free of charge. Who knows, we might have it up and running in time for the meetup, and perhaps some of the people who couldn't attend can join us at a set time to chit chat with us. Anyone would be able to join in by video/audio with a webcam and microphone, or with just a microphone, or on the chat line. We'll see if we can get it all set up to try it out during the meetup. If all goes well, we'll be able to start our International Body Odor Webinar Series with the experts in the days and weeks to follow.

I'm really excited about this as well. It seems that the year 2010 is starting off very well!

María

[mpdela]

Here's the thread I refer to in my post, to Luckyhope, http://www.bodyodorsupport.com/showp...97&postcount=8

Since my discussion with Dr. Greenberg in February 2010, this is still my opinion, and I would encourage anyone and everyone in this community to email her to see what they’ve come up with:

I believe that there is a marked distinction between Olfactory Reference Syndrome (ORF) and Obsessive Compulsive Disorder (OCD), and that distinction is that ORS is based on delusional behavior – or living a lie, and OCD can be based on an uncontrollable and persistent preoccupation with a real existing condition that one has not learned to cope with. I believe that most everyone, if not everyone, that has a body odor condition does suffer from OCD, and this is where PROPER mental health treatment can help us cope with this debilitation and potentially socially limiting condition (OCD).

However, to arrive at an ORS diagnosis without conclusive diagnostic testing (not yet scientifically developed) serves only to create greater psychological turmoil by the mental health treatment revolving on trying to persuade a sufferer that the social assaults they receive on a regular basis is not real but rather delusional. The whole purpose of mental health treatment rests on the goal of assisting the patient to DEAL WITH his/her reality. But the ORS treatment currently used is to persuade the patient to recognize that their reality isn’t real.

One thing I know for sure is that most, if not all, persons diagnosed with TMAU have been told at one point or another in their lives that it’s all in their minds, delusional, ORS. There’s something wrong with this picture!

I believe in OCD treatment, not ORS treatment. Not until we can conclusively diagnose ALL (not only TMAU) body odor and systemic halitosis conditions scientifically will I accept an ORS diagnosis as being valid. This is my personal opinion only, and not necessarily of the mental health profession, which still lives in the dark ages when it comes to ORS, imho.

María

[mpdela]

I just found that in Wikipedia, it says,

ORS is NOT recognised by the Diagnostic and Statistical Manual of Mental Disorders, http://en.wikipedia.org/wiki/Diagnos...ntal_Disorders , however it is considered by many to be a sub-type of Body dysmorphic disorder. ORS links obsessive and compulsive aspects. Sufferers may have trouble concentrating at a give task or in particular situations due to obsessive thoughts concerning body odor.

I wonder why ORS is NOT recognized by the Diagnostic and Statistical Manual of Mental Disorders? Does anyone know?

Maria

[mpdela]

Guys, we do make a difference when we speak out.

RE: an ABC News article on Olfactory Reference Syndrome http://abcnews.go.com/Health/MindMoo...0743337&page=1

Even though this article is profoundly upsetting in that it talks about some psychiatrists considering listing ORS as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders, thus giving it greater validation, I am pleased to say that Dr. Jennifer Greenberg, whom we communicated with regarding this as documented on this thread and whose survey many of us participated in, stood up and gave her opinion in this article about her shift of treatment focus from ORS to OCD.

The customary treatment focus for ORS has been geared toward curing someone of a delusional condition. However, Dr. Greenberg has shifted her opinion,

"A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.

While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."

The patients who end up at specialized clinics such as Greenberg's, Phillips' and the OCD Center of Los Angeles often receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking. http://abcnews.go.com/Health/MindMoo...0743337&page=2

This is a positive step forward resulting from our raising social awareness campaign as a united international community. Here's one of the comments I wrote in this article, http://abcnews.go.com/Health/MindMoo...ry&id=10743337

Thank you Dr. Greenberg for shifting the focus of treatment from trying to convince a patient that they are delusional to instead be a disorder that is closer to OCD, in which the patient is encouraged to receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking. It is very true that not everyone in society perceives their odor, so at least there is a window of opportunity to enjoy a productive social life. Unfortunately, those persons who are offended by one’s body odor would not be good candidates to socialize with, but there are those persons who simply don’t perceive some body odors.

Maria de la Torre
Founder and Director
MEBO Research
www.meboresearch.com

Thanks to everyone who participated in Dr. Greenberg's survey and who wrote to her as she reached out to us to gather information. I also recommend that anyone who feels lead to do so write a comment in this article as well.

María