Join/Watch the weekly
TMAU UP Podcasts

MEBO Private Facebook Group
to join : contact
maria.delatorre@meboresearch.org

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only
PROGRAM IS PERMANENTLY SUSPENDED AS OF 2 MAY 2017

Click here for
REQUISITION FORM
Incomplete applications
will NOT be processed

SEE UPDATES HERE

1
test
$150 plus
shipping costs
2
tests
$250 plus
shipping costs

TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.

Test analysis performed in batches of 20 or more

DATE: 2 MAY 2017
Currently on : PROGRAM IS TEMPORARILY SUSPENDED

Samples analyzed since June 2012 :
352
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

Saturday, June 19, 2010

Raising Social Awareness in Mental Health Field

Below you will find a copy of two emails, one from the OCD Center of L.A. in which they explain and attempt to justify the ORS diagnoses they give their patients, and the other email is my rebuttal, as I attempt to raise social awareness in the mental health field.

It is my hope that by raising social awareness, sufferers who seek mental health therapy get the proper diagnosis and treatment needed. Who knows, perhaps by raising social awareness in this manner, we might be able to obtain grants for research in the development of proper diagnostic equipment for persons who present to their doctors with body odor conditions.

I apologize for the lengthiness of my rebuttal, but I believe all the points I raise need to be raised. Please feel free at any time to copy and paste any and all parts of my rebuttal if it helps you also raise social awareness.

From: OCD Center of L.A.
Date: Wed, Jun 16, 2010 at 10:38 AM
Subject: Olfactory Reference Syndrome
To: maria.delatorre@meboresearch.org


Maria,

Thank you for your email.

We don't use any "tests" to see if someone smells. Simply put, we are sitting in a small therapy room, and it would be quite evident if the client smelled. We also ask spouses and family members about the alleged odor. We also ask about the clients' co-workers and friends. If these other sources say that they have never detected the client's alleged odor, that supports our personal experience of sitting in the room and noting that they do not smell.

ORS and other psychiatric conditions are not diagnosed or treated using equipment that measures bodily functions. In the case of ORS, our data collection is simple - we discuss the clients symptoms with them, and we observe using our five senses. We do not need biological measurements to tell us if someone is emitting a foul odor, nor do our clients' spouses, family members, friends, and co-workers.

We have treated many cases of ORS over the years. In every case, the client emitted no foul odor. In every case, the people in their lives (spouses, family members, friends, co-workers, etc.) confirmed that they had never once detected any foul odor. None of these clients have ever exhibited any observable odor that suggested they might have Trimethylaminuria or any other physiological condition. None have ever reported a situation in which others observe that they smell like fecal matter. In fact, just the opposite is true - in every single case, the client has been unable to find anyone to confirm the presence of the alleged odor.

OCD Center of Los Angeles


From: Maria de la Torre
Date: Wed, Jun 16, 2010 at 12:27 PM
Subject: Re: Olfactory Reference Syndrome
To: "OCD Center of L.A."

(I’m sorry, I don’t know the name of the person who replied to me and to whom I’m replying.)

To whom it may concern in OCD Center of LA:

I can appreciate that you have treated many so-called cases of ORS, diagnosed by you based on subjective observations of family members, friends, and co-workers, and this is precisely why I question the basis of your diagnoses.
I do hope you insist that each patient you diagnose with ORS is at least tested for Trimethylaminuria before you arrive at your diagnosis, since everyone diagnosed with Trimethylaminuria had previously been told possibly more than once by family and friends that it’s all in their mind, or worse, diagnosed with ORS.
Would you diagnose a child as having frequent almost undetectable seizures after running a series of diagnostic tests, or would you instead simply diagnose the behavior as ADHD because that’s what is apparent to your sense of sight, and what family and friends tell you they observe? After all, the child is running around uncontrollably, then stops for a while, and then repeats the behavior. After all, family, friends and teachers should know; they live with this person most of the day, day in and day out.

What about learning disabilities? Should we just scold a child for not obeying, or should we test for language processing deficit or any of the other LDs? You know better than I that with a language processing deficit diagnosis arrived at through proper testing, a child can learn to circumvent this disability and become totally functional and even obtain a college degree with a successful career. What is the saving factor for the patient in both these cases, professional diagnostic testing, not a diagnosis based solely on subjectivity of family, friends, co-workers and a therapist.

I can also appreciate that you don’t use “tests” to see if someone smells because other than the test for Trimethylaminuria, there are no others, and thus unfortunately, many persons go undiagnosed and have to go through a very difficult daily existence. I do hope you insist that each patient you diagnose with ORS is at least tested for Trimethylaminuria before you arrive at your diagnosis, since everyone diagnosed with Trimethylaminuria had previously been told possibly more than once by family and friends that it’s all in their mind, or worse, diagnosed with ORS.

I can appreciate that many psychiatric conditions are based on a series of symptoms that cannot be tested with diagnostic equipment, since they are emotional related, yet ORS is based on a physical manifestation that could in theory and practice be measured with diagnostic equipment.
the therapist, who is supposed to help the patient cope with his/her reality, goes on a limb and diagnoses this patient with ORS based on subjective opinions and not diagnostic tests
I’m certain that most professionals would agree that a diagnostic equipment that measures volatile organic compounds is much more accurate than the human olfactory system, since the electronic equipment has a far greater range of sensitivity. There are scientific research studies that clearly point to the diversity in olfactory function amongst humans, with factors such as acclimation having a predominant role in human olfactory perception, whereas electronic equipment would not experience acclimation.

Since your ORS diagnosis is based on public perception, we can identify that there is a percentage of society unable to detect odor, such as your patient’s family, friends, small group of co-workers, and his therapist. This in fact, should be beneficial to this very lucky patient in that it opens up a whole segment of society in which he can function well socially, if given the proper diagnosis and treatment to overcome his anxiety and phobias.

However, it doesn’t rule out those persons in society which your patient may have come in contact with, and may still be coming in contact with, that are still able to detect his odor; therefore, in theory, this small group of persons in society that do detect odor could behave in an overtly or covertly hostile manner toward your patient, and you patient may becomes overwhelmed not knowing how to cope with his reality, thus developing OCD behavior.
Isn’t therapy supposed to help the patient identify reality, including the gray areas of life? But the patient’s reality was never measured scientifically with the proper diagnostic equipment to even measure the gray area, so the therapist has no clue what the patient's reality is or is not.
Unfortunately the therapist, who is supposed to help the patient cope with his/her reality, goes on a limb and diagnoses this patient with ORS based on subjective opinions and not diagnostic tests, attempts to teach him than his ability to perceive his reality is questionable at best. And unfortunately most frequently, the goal is geared towards teaching the patients that the reality they have experienced is not real. Isn’t therapy supposed to help the patient identify reality, including the gray areas of life? But the patient’s reality was never measured scientifically with the proper diagnostic equipment to even measure the gray area, so the therapist has no clue what the patient's reality is or is not. Instead, it is just assumed that the patient is delusional and hallucinatory and given a diagnosis connoting psychosis, even without this diagnostic tool.

Until the proper diagnostic equipment is fully developed and made available to the medical community, my opinion is that what the patient truly needs from her mental health therapist is two-fold, not to be insistently told that she doesn’t smell and that she doesn't perceive her reality correctly, but rather to help her develop realistic techniques to identify who does and who does not detect her odor. This way, the patient can see a window of opportunity for a happy social life, NOT EXCLUDING the possible reality that others may detect her odor. Secondly, therapy would be most helpful in helping the patient alleviate or decrease the obsession with her odor by focusing on developing a positive social life with those persons who claim that they don't smell her and are not bothered at all with her scent, if any.
Having had a false psychosis diagnosis may haunt all your patients in their future, even after the proper diagnostic equipment has been developed, for they will carry with them from hence forth a potentially misdiagnosed psychosis.

This approach is very different from labeling someone as delusional and hallucinatory,which would carry with it a psychosis diagnosis especially when taking into consideration that the basis for the diagnosis has not been thoroughly tested, if at all. Instead, it is based on very subjective observations of non-expert in the olfactory or body odor field.

Having had a false psychosis diagnosis may haunt all your patients in their future, even after the proper diagnostic equipment has been developed, for they will carry with them from hence forth a potentially misdiagnosed psychosis. Until such time as the appropriate tests have been developed, the proper diagnosis for this condition should fall under the OCD Classification, if for no other reason, in an attempt to prevent misdiagnoses.

María de la Torre
Founder and Director
MEBO Research
maria.delatorre@meboresearch.com

UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.


1 comments:

Anonymous said...

i think this would be a Great topic for a future recorded Webinar

Dec 30, 2012, 1:58:00 PM
Post a Comment