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Showing posts with label Raising Awareness Campaign. Show all posts
Showing posts with label Raising Awareness Campaign. Show all posts

Monday, April 23, 2018

Japanese Study: Elevated petrochemicals in PATM


Japanese TV show, "World Astonishing News"

PATM, which stands for People are Allergic To Me, is a condition in which the sufferer notices that people around him or her tend to experience allergic reactions, which eventually subside after the sufferer steps away from the person.

In Japan the topic of PATM seems to be very prominent. While many medical professionals there consider it to be a delusional mental disorder (Olfactory Reference Syndrome (ORS), Jikoshu-kyōfu) there are also some experts who believe that it really exists, and are carrying out research in an attempt to help PATM sufferers understand the cause of their condition. A study carried out by Drs. Yasuhiro Konishi, M.D., of the Konishi Clinic in Japan, and a researcher, Professor Yoshika Sekine, involved a skin gas test of PATM patients, which showed that the PATM patients had abnormally high amounts of petrochemicals. Even though in most cases, the elevated chemical was toluene, also known as toluol or methylbenzene, there were also other elevated petrochemicals. It is normal to have these chemicals in the human body, but in low amounts. Toluol is also used in paint thinners and known for its irritating effects on the nervous system, eyes and respiratory system.

These finding would suggest that there is the possibility that petrochemicals may very well be the underlying cause of PATM. More research into this condition would be most helpful in order to be able to help PATM sufferers control the levels of these chemicals to enrich their social life and potentially their health. MEBO is poised and ready to research further into these and possibly other metabolites resulting in PATM.

The Japanese TV show, "World Astonishing News" presents a classic case of PATM, allows the researchers the opportunity to be interviewed and to present their findings and analysis on this mysterious disease.

Below is the translated summary of the PATM part starting at time interval 30:10 of the above YouTube video:


Six years previous to starting treatment for what she would subsequently identify as PATM, this ordinary woman in her 40s noticed strange things happening. She was a teacher at a school and also attending night classes to get a new qualification. One day she started feeling very tired but didn’t have a fever, so she resolved to sleep more but still couldn’t get rid of the fatigue, which continued for a year. She noticed meanwhile that her students noticed a weird smell in class that she didn’t notice. Then they had itchy eyes when she was near them but it stopped when she moved away, then on the other side of the class they’d start up there. Students reported an “old house” or “burnt” or “weird” smell and it also happened to the other teachers.

She started to think she might be the cause so she took lots of time to wash her body and used anti-odour products on her clothes and underwear, and carry an anti-odour spray at all times but it didn’t help and she stopped thinking it could be just her imagination. She explained it to her parents but they didn’t notice any smell. But she felt she was causing bother to those around her so she changed jobs but the same things started up – people coughing and noticing a burnt smell.

Six years after she started noticing the symptoms, she found an article online about PATM and thought it applied to her so she found a hospital that does PATM examinations. The doctor did a “skin gases test” – apparently humans, from kids to the elderly, produce over 300 different types of gas including flatulence, and they are collectively referred to as skin gases. When they did the test the doctor said that she produced high levels of toluene, a petrochemical found in things like glue and contact cement, which is toxic and strictly regulated.

The mechanism behind PATM is still not understood but one theory is that skin gases given off by sufferers cause allergy-like reactions in those around them. More research is needed to find if this is the real cause of the condition, but the doctor says that when they examine people who report PATM-like symptoms, in almost 100% of cases they find high levels of petrochemicals. The graph shown at 40:35 shows levels of xylene, 2-ethyl-1-hexanol, ethylbenzene and toluene in non-PATM person/s (green), and two different people who report PATM (red and blue). Those people did indeed have high levels of various chemicals. The chemical found to be high in the woman this report is about, toluene, smells of paint thinner or gasoline, and can sting the eyes, nose and throat. It is found in all human bodies in small amounts but this patient had very high levels. The exact relationship between the smell and the symptoms is not yet fully understood but it is possible that if there were people sensitive to this chemical around such a person, they could potentially show allergy-like symptoms.

The patient has been treated for PATM for the past two years and is taking various supplements to improve her digestive system and her body’s ability to remove toxins. As shown in the video at 43:40, with the patient’s permission, they have someone get up close to her face and fail no notice any kind of smell or sting in their eyes etc.. While she had a great improvement with this treatment, since the exact causes of PATM are not yet known, this isn’t a treatment that all sufferers could benefit from. There is no “wonder drug” for PATM – the patients are treated by trying to “balance their bodies” and some are helped while some aren’t.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
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Raising Awareness about PATM

It is MEBO’s aim to allow its members from around the world to have a voice and the opportunity to tell their story to the world. For this reason, the MEBO Raising Awareness Campaign was created. This video is made by a young university student in the Middle East, who wants the opportunity to comment on the study carried out by Professor Yoshika Sekine and his team of researchers (2018). The graphs shown in this video taken from Professor Sekine’s Slideshow presentation for the MEBO Conference clearly show the presence of chemicals and microbes found on PATM subjects.

In this video, Muhammad also addresses Olfactory Reference Syndrome (ORS), which many in the medical community resort to, for lack of research to form a more targeted diagnosis. It is for this very reason that the American Psychiatric Association (APA) listed ORS in the Appendix for Further Research classification. It is now classified as “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category,” says Dr. Jennifer L. Greenberg, Psy.D., with the Massachusetts General Hospital and Harvard Medical School., who studied our MEBO community in 2010. This classification now calls for mental health therapy for body odor and PATM sufferers to be focused on treating the anxiety and obsessive-compulsive disorder that comes with having these conditions, as opposed to being administered medication for delusional symptoms, in order to help sufferers become functional members of society.


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.

This MEBO member who suffers from PATM Syndrome, represents a large sector of the MEBO population who have observed how those around them, and in some cases their own children, experience allergic reactions when they are near the PATM sufferer. “It’s like ‘the cat’ entered the room, and my kids start to sneeze, get teary eyed, when they get near me, and then their symptoms stop when I leave! I am their father, and I want to be able to be with them without inflicting these symptoms on my own kids!” says a PATM sufferer.

Thank you Muhammad for telling your story and representing the whole PATM community around the world.


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

Monday, April 16, 2018

MEBO Annual Conference, Savannah 2018

Excerpts from Prof Sekine's PowerPoint Presentation, MEBO Annual Conference, Savannah, Ga.


Wednesday, March 21, 2018

Olfactory Reference Syndrome, body odor, halitosis, PATM

SUMMARY OF PAST MENTAL HEALTH DISCOURSE

OLFACTORY REFERENCE SYNDROME
ODOR CONDITIONS AND PATM

In 2010, a group of mental health professionals attempted to include Olfactory Reference Syndrome (ORS) in the American Psychiatrist Manual of Mental Disorders as a delusional condition, and MEBO confronted them with a emboldened debate presenting the lack of scientific evidence to support this diagnosis. As a result of this discourse, the American Psychiatric Association (APA) listed ORS in the Appendix for Further Research, as opposed to the more serious classification originally sought by some in the mental health field. It is now classified as “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category.” This classification now calls for mental health therapy for body odor and PATM sufferers to be focused on treating the anxiety and obsessive-compulsive disorder that comes with having these conditions in order to help sufferers become functional members of society.

The whole concept of ORS totally dismisses the fact that the human olfactory system ranges widely from being anosmic to hyperosmic. ORS also completely dismisses the reality of the range between hyposensitive to hypersensitive responses of the immune system to chemical allergens emitted from the body.
For many years, Olfactory Reference Syndrome has been considered to be a psychiatric condition that labels the patient as being delusional with a persistent false belief and preoccupation with the idea of emitting body or breath odor. This diagnosis has also been applied to patients who are convinced that they are emitting a chemical that may even be odorless to some people they come in contact with, which cause them to have an allergic reaction. These people call themselves, PATM sufferers (People are Allergic To Me).

Our Raising Awareness Campaign was launched with the help of Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School. Dr. Greenberg, who invited all the members of our community to participate in a survey to hear our side of the story, and many of us filled out her survey. In addition, the online emails and comments we wrote in response to online articles written by various News networks also clearly explained the lack of scientific basis for ORS diagnosis. In the end, Dr. Greenberg concluded,


body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer.


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.

As a result, an ORS diagnosis results in additional serious mental trauma to the patient who may already be suffering from any of the five major types of anxiety disorders resulting from incongruent social responses...
The whole concept of ORS totally dismisses the fact that the human olfactory system ranges widely from being anosmic to hyperosmic. The questions that need to be addressed are, “Do they smell me or not?” and what would a patient's metabolite panel of tests, which still needs to be scientifically developed, look like? The answer is far from being clear cut. ORS also completely dismisses the reality of the range between hyposensitive to hypersensitive responses of the immune system to chemical allergens emitted from the body. In other words, the diagnosis of Olfactory Reference Syndrome has absolutely no scientific basis whatsoever without diagnostic testing of the patient’s levels of certain odorous metabolites. As a result, an ORS diagnosis results in additional serious mental trauma to the patient who may already be suffering from any of the five major types of anxiety disorders resulting from incongruent social responses, such as Generalized Anxiety Disorder, Obsessive-Compulsive Disorder (OCD), Panic Disorder, Post-Traumatic Stress Disorder (PTSD) and/or Social Phobia (Social Anxiety Disorder).

Unfortunately, since there has been very little funding for research into odorous metabolites that may become elevated at any time throughout the day of a sufferer, triggered by diet, stress, hormonal changes, genetic metabolic deficiencies, gut microbial composition, etc., science and the medical fields do not really have evidence of whether or when their patient is indeed having intermittent odor episodes or elevated odorless chemicals...
This blog has addressed the issues surrounding an ORS diagnosis in 12 posts thus far depicting the dichotomy sufferers have to deal with on a daily basis in which some people argue that a sufferer is not emitting odor at any given moment in time, while at the same time, others express that they are offended by the odor they detect from the same individual. This constant bombardment of inconsistent social feedback makes everyday life a torturous ordeal. Eventually as a result of having to face this constant inconsistency, the sufferer develops a profound sense of loss of control over his or her life and develop anxiety and depression.

Unfortunately, since there has been very little funding for research into odorous metabolites that may become elevated at any time throughout the day of a sufferer, triggered by diet, stress, hormonal changes, genetic metabolic deficiencies, gut microbial composition, etc., science and the medical fields do not really have evidence of whether or when their patient is indeed having intermittent odor episodes or elevated odorless chemicals.... There are no diagnostic tests developed for them to arrive at a scientifically based diagnosis. The unfortunate result of this ignorance and for lack of a better option, the sufferer is currently branded with the diagnosis of Olfactory Reference Syndrome (ORS). Consequently, when giving this diagnosis, the mental health therapist simply assumed, without any scientific evidence supporting that indeed the patient does not have elevated levels of chemicals, which are emitted by the body’s cleansing organs in the breath, skin perspiration and oils and urine. However, unfortunately, due to profound ignorance in the scientific and medical field regarding these conditions, the patient has been incorrectly branded with a diagnosis that falls in the realm of psychosis.

The therapist simply appears to be blinded to the primary anxiety disorder syndrome the patient is manifesting because the therapist is uninformed about body odor, halitosis, and PATM conditions. As the patient’s anxiety disorder escalates, it seriously disrupts his or her ability to function at work, at school, socially, and in family life. It utterly destroys the patient’s life, and the mental health therapist just sealed the deal with a devastating and damaging diagnosis that could arise at any time in the patient’s future raising doubts about his or her mental sanity and mental capability to be able to hold certain types career choices.

Through the years, it has been MEBO’s most ardent commitment to continue to pursue research funding in an effort to carry out extensive clinical trials to identify the metabolites in body odor, halitosis, and PATM sufferers, not only to completely expunge the validity of ORS, but to then find the proper treatment protocol to correct the conditions, so that patients will no longer have the real social consequences that caused them to develop the anxiety disorder to begin with. So far, MEBO has carried out three clinical trials registered with clinicaltrials.gov, with interesting preliminary results that suggest further research is absolutely called for. It is MEBO’s Mission to continue in the pursuit of this line of research until proper treatment and a cure is arrived at.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
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Sunday, April 17, 2016

Cassie TMAU documentary on UK TV 24th March

TMAU Activist Cassie Graves on UK TV next week
Thursday 24th March, 8pm , Channel 5
Cassie allowed filming of her TMAU diagnosis journey last year
Did the show to raise TMAU awareness

Update : watch Cassie TMAU video in this post 

Cassie Graves has done a number of high-profile media TMAU articles to raise awareness, including an article in the most read online newspaper website The Daily Mail . Last year she allowed a TV production crew to film her on her 'TMAU diagnosis journey'. The story will appear on UK TV next week. It looks like it will be 1 of 3 stories intertwined over an hour.

UK Channel 5
8pm Thursday 24 March
MEDICAL MYSTERIES : Series 1 Episode 1
THE WOMAN WHO SMELLS OF FISH
Channel 5 live (UK only ? ) : Link
Other Channel 5 live (UK only ?) : Link2

Post from Cassie this week in the MEBO private Facebook group

Been out of the loop for a while because I'm getting myself forward in UK politics and just started at university.

My life has had a massive overhaul, I'm on anti-depressants, in therapy, and I've quit music, and I've kind of tried to keep focused on my civil rights lately.

But I just wanted to let you lovely lot know that on March 24th at 8pm in the UK, I will be on Channel 5. The documentary I filmed last year filming my diagnosis journey will finally be airing, and despite being a minor-ish story, the episode has been named after me (which I found kind of amusing).

So if you can/want to, those are the details. I don't watch myself on screen, so I won't be watching it for a while (also I'm at a political meeting that evening), but I did film it to spread awareness

Cassie is already in the TMAU 'Hall of Heroes' along with Camille, Sandy, Arun, Cheryl Fields, Karen, Ellie, Claire, and the others who have appeared in the media including Youtubers, to raise awareness of what must be the most embarrassing disorder and is still unknown to probably 99% of Health professionals and public. Thank you to Cassie and all of you. We are in your debt.

Links :
Cassie on Twitter
Cassie on Youtube



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Tuesday, February 23, 2016

World Rare Disease Day: Feb 29, 2016

2016 ANNUAL RARE DISEASE DAY
be a part of the experience

All are welcomed to get involved in this year's World Rare Disease Day on Monday, February 29, 2016! Join the movement! Advocate for the over 350 million with a RARE disease today! Click here to see how to get involved.



World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally.

Last year, volunteers from our community participated in this annual event by telling their story in the 'Share Your Story Through Social Media' part of this event.

There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.

Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information and events with Global Genes' FacebookTwitter, and Instagram. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.


NORDEurodis

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


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Thursday, March 12, 2015

TMAU movie is available on most film download sites

'The Boy Who Smells Like Fish' movie now re titled and re-marketed as 'Treading Water'

To be screened in some USA cities this week

Now available to watch no most major movie streaming sites (eg iTunes, Amazon, Google Play, Cable, Satellite, Xbox, PlayStation and VUDU)

The movie 'The Boy Who Smells Like Fish' has been retitled 'Treading Water' and is now available to watch on most movie streaming sites (perhaps USA only currently) such as Itunes, Amazon, Google Play

Itunes link       
Amazon : link      
Google Play : link
check for availability with other streaming sites

Movie to be screened at some USA cities this week 

The retitled movie (now 'Treading Water') will be shown at the following USA cinemas from 13th March

Cinema Village (New York, NY)
Laemmle Music Hall (Los Angeles, CA)
PFS Roxy (Philadelphia, PA)
Plaza Theatre (Atlanta, GA)
Harkins Shea 14 (Phoenix, AZ )
Harkins Northfield (Denver, CO)
4-Star Theater (San Francisco, CA)
Studio Movie Grill (Dallas, TX)
Sundance Cinema (Houston, TX)
Sundance Cinema (Seattle, WA)

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


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A EURORDIS and NORD Member Organization