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
MEBO's Blog (English)
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Homeworking job-leads website : ratracerebellion.com

MEBO Research is aware there is an interest in home-based working and other forms of  income. While our community awaits therapies or cures for odor conditions, some would prefer to work at home to avoid stressful situations.

One site recommended to us by a community member is the website ratracerebellion.com , which has many ideas and leads as how to work from home. Ideally MEBO would like to be an agency like this someday, being most sensitive to our community's situation. Thanks to the person who notified us of this website.

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MEBO Research

What I love about our new Skunkhungs Skype Group

I was reading most of the chat today in our Skype Group, and I just couldn't help but feel excited about the fact that the rhetoric is so diverse! It is so intellectually stimulating! It also makes me realize that MEBO has been very focused on systemic, metabolic, and genetic causes of body odor, and so much more needs to be explored. Even though we barely scratched the surface of environmental factors with our Gut Dysbiosis exploratory study, there is so much info in the IBS forum that I have been unaware of. I hope to learn about all the diversity of theories that exists on what could possibly be causing body odor.


Comments from MEBO UK's Scientific Director, Colin Harvey-Woodworth in "bb & bo group" on Friday, January 27, 2012,:

[1:50:09 PM] mmx (meboresearch.org): Hi Maria. Whilst MEBO's clinical research will remain directed towards systemic malodor, if we are to become experts in "malodorology/ foetorology", we will still intimate knowledge of all the diagnoses that make up the spectrum of malodor conditions. As such, even a "simple" causes of malodor (such as intraoral halitosis or innocent malodorous flatus secondary to SIBO or gut dysbiosys) will need to be identified and successuflly treated. We will need to have these skills if we are to open a malodor clinic and research center, to successfully exclude the conditions during the differential diagnosis. My own background has been from the IBS forum which I joined 6 months ago. I have gone from being ignorant of many of these topics to having detailed knowledge of many of the conditions during this time. Hollistic medicine - considering the patient as a whole person rather than a collection of problems and diagnoses is most certainly the way forward. Personally I believe that the field of gastroeterology would best serve as a introduction to the maldodorology. Further more, not only are these concepts intimately linked with secondary-to- dysbiosis "overload" cases of systemic odor like secondary TMAU, but detailed knowledge of nutrition also comes into to play when understanding the dietary protocols for management.
[1:52:08 PM] mmx (meboresearch.org): I have defined the skeleton of the spectrum of malodor conditions in the contents page of "Foetor Medicinae"...now we just need to fill in all the gaps and expand all the sections in the classification.

There is not only one cause for all conditions or only one cause for each individual. Perhaps, since the body works as a whole, when one aspect of our body goes off, the others are also affected resulting in a domino effect.

I am most grateful that JoJo organized this skype group and reached out to all the forums. We have much to learn from each other, and we will do very well to keep an open mind, and to crave from each other what seems to be radically new ideas. By opening our minds and expanding our knowledge, we may very well encounter a few AHA moments.

Everyone is welcome to join this Skype Group and to participate in our discussion. We welcome new members with open arms.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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The MEBO Forum Please sign the MEBO Petition

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Cheryl fields now available to contact via skype

Cheryl Fields, Ph.D. (ABD)
MEBO Community Outreach Director.
Book uplifting seminars for free.

Click here for details and scroll down
Home/Voicemail (785)-286-7005
email: cheryl.fields@meboresearch.org

Cheryl's list of FAQ's

skype username : Cheryl Fields

For many years, Cheryl Fields has been a friend to all the community and has kindly allowed anyone to contact her by phone at anytime if they wish to talk to someone. Now people can also contact Cheryl via skype around the world for free (if you have skype program on your computer).

Cheryl can be contacted by contacting her skype username dr.stillstanding, or you can click on the skype link shown in the box.

Link : Download Skype (You can get the free version)

Click here to vote for Cheryl to appear on CNN

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MEBO Research

Halitology : A review paper

click to read halitology abstract

A paper has recently been published which seems to be an overview of halitosis, terming the subject 'halitology'. Professor Greenman has a long interest in halitosis, and is associated with ISBOR. Professor Scully is an esteemed dental surgeon.

Prof. Greenman is very likely aware of the work of Drs Wevers and Tangerman regarding dimethylsulfide being an 'extra-oral' cause of halitosis (eg, metabolic). Probably TMAU is mentioned in the overview too. There is a good chance it is a 'cutting edge' overview as far as allopathic medicine is concerned.

However, as halitosis sufferers are probably aware, there's a good chance it misses the 'transient metabolic' cases, where the person probably does not smell at a dental visit. Most of these people are likely to end up classed as 'halitophobic'. There must be a chance inclusion of 'transient metabolic' cases would change the estimates of each category by a considerable amount.

Unfortunately only the abstract is available to read for free.
Halitology : an overview (abstract on pubmed)

Fifth International Rare Disease Day by EURORDIS

A WORD FROM CHERYL FIELDS, MEBO U.S. Community Outreach Director
to our international community

February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!

29 FEBRUARY 2012 is International Rare Disease Day.

***During the month of February 2012, this year we will be raising awareness about TMAU for the entire month of February 2012. This is our time to stand, shine, and make positive contributions about our disorder/disease. Please stand by for additional details on how you all can help make it happen.

Cheryl has informed EURORDIS of the following:

We [MEBO Research]are asking for volunteers from all over the world to contact their local media outlets to do a story on MEBO Research and people with TMAU. The goal of the group is to get on CNN international and on the global international television stations.There are TMAU patients all over the world. People with disabilities deserve a fair chance to work, live, and love.

Thank you so very much for your time.
www.meboresearch.org/index.

Very Sincerely,


Cheryl Fields, MBA, Ph.D. (ABD)
Community Outreach Director
MEBO Research
(785)-286-7005, Home Office/Voice-Mail
E-Mail: cheryl.fields@meboresearch.org

Dr. StillStanding----somehow?

She has also written to various rare genetic diseases groups asking for support and participation on International Rare Disease Day, such as the organizations listed below:

1. Hong Kong Mucopolysaccharidoses Rare Genetic Diseases Mutual Aid Group
2. Canadian Organization for Rare Disorders
3. National Alliance for Rare Diseases Romania

Let's show our support to Cheryl, and if you are planning an awareness-raising event in a country that is not listed here, please contact Cheryl at:

cheryl.fields@meboresearch.org, or
emporia962000@yahoo.com

Your participation is greatly appreciated.

THE MEBO TEAM

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maria.delatorre@meboresearch.org
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CNN iReport: Please support Cheryl's CNN iReport vetting

http://ireport.cnn.com/docs/DOC-736258

LET US BE HEARD!

Let's give Cheryl the opportunity to tell our story on CNN iReport by us telling CNN that we support the vetting of her show. Please show support for Cheryl's iReport: Rare Diseases Day (World Coverage) by going to www.ireport.cnn.com/explore.jspa, scroll to the bottom of Cheryl's story, and Click on "This belongs on CNN". Please ask family and friends to do the same.

Click here, Scroll down, and

Click on "This belongs on CNN"

There are various ways to show support, and in this case, a simple registering with CNN iReport and clicking on a tab to support this effort goes a long way. Your comments to CNN are also influential.

Cheryl has written to various organizations asking for support for her CNN iReport and for the Fifth International Rare Disease Day, organized by EURORDIS, Rare Disease Europe. She asks them to write a quote about TMAU patients and the social difficulties that may face TMAU victims. She may need our support as well in this effort in the near future, so please standby ready to tell your story when the time comes. It would be greatly appreciated!

IDEA: "A group that has a rare disease that makes it almost impossible for them to have a social life or find employment wants to be featured in the media and hopes CNN will air their story during Rare Diseases Day, in February 2012. The group would like 2-3 people to appear on tv, telling their stories about the discrimination and frustration they have endured, while having this rare disease, that affects about 1%-3% of the population. The majority of the patients are African American, and since February is National Black History month, the group may be able to kill two birds with one stone?"

The group hopes to gain exposure, acceptance, and who knows even job offers. Once CNN did a story on a man with severe facial disfigurements and before the show was over that man had folks calling into the CNN station offering him employment, medical treatments, and donations!

THE MEBO TEAM

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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Cheryl Fields representing us: Southern Poverty Law Center, and CNN press release

MEBO US's Community Outreach Director, Dr. Cheryl Fields (aka, Dr. StillSanding) is spearheading a couple of great projects for 2012 to raise awareness that we hope will be far-reaching in the US and internationally.

1. She will be visiting the headquarters of Southern Poverty Law Center (SPLC) in Montgomery, Alabama, representing our community as our Community Outreach Director, where she will be presenting the plight of sufferers of TMAU and other body odor and halitosis conditions. In this visit, Cheryl hopes to establish relations with persons dedicated to equal rights. SPLC's rich history in the civil rights movement is noteworthy, "Since our founding in 1971, we’ve won numerous landmark legal victories on behalf of the exploited, the powerless and the forgotten." This organization has a Teaching Tolerance program, which "produces and distributes – free of charge – documentary films, books, lesson plans and other materials that promote tolerance and respect in our nation’s schools."
2. Press release with CNN: to raise awareness of the career and social challenges encountered living with TMAU and other yet to be diagnosed body malodor and halitosis conditions.

A note from Cheryl:

I will be going to the Southern Poverty Law Center in Feb. 2012 to talk about TMAU, discrimination, my personal story, and about a human resources director job. I am asking for stories about job discrimination from people with TMAU. We (Maria and I) are also working on a press release and trying to get on CNN. Anyone can go on CNN that wants to. The purpose of the CNN piece will be to show people with TMAU that have been looking for jobs and have been unsuccessful.

Once there was a man with disabilities on CNN and before the show was over he got tons of job offers from the viewers of CNN around the word. We need exposure. I know I will be going on the CNN piece, and one other person. Great way to bring exposure to a delicate situation and get a job offer too. CNN is huge! We also will help our charity, MEBO.

Cheryl

On behalf of our international community, we thank you Cheryl for reaching out to community resources as you state our cause. It's good to know that we have someone like you in the forefront representing us!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

Poll : body odor or halitosis : Can you tolerate flagyl well ?

Body odor/halitosis : Can you tolerate flagyl/metronidazole well ?

There is some anecdotal evidence that some in our group do not tolerate flagyl/metronidazole very well (or other certain drugs). There could be a number of reasons for this, none of which are provable in this context.

Some possible reasons are :
Some issue to do with the group of cell enzymes known in pharmacology as 'drug metabolizing enzymes'. This includes enzymes such as FMO3 and CYP450.
wikipedia link for 'drug metabolism'

Perhaps 'die-off' of microbes or some other issue to do with gut microbes (such as candida thriving)

Some other reason, such as gut inflammation, allergy etc

The poll is to gauge anecdotally as to how well the community feel well using flagyl/metronidazole.

MEBO Research

The Shreveport Louisiana meetup : March 23-24

Shreveport meetup : Are you going ?

View Larger Map

Shreveport Louisiana Meetup

Best Western Chateau Suite Hotel

23-24 March 2012 (overnight stay planned)

A Meet and Greet at 8.30pm Friday in the lobby under the chandelier

The big Saturday meetup : Village Square Buffet at the Horseshoe Casino at 2 pm

Contact Kim for details
See this forum link

Trimethylaminuria testing in Cardiff, Wales

Trimethylaminuria (TMAU) is currently the only current recognised 'systemic' odor condition, but testing for it through the public health system can be difficult due to lack of awareness.

Medium-term, the way 'specialist treatment' will develop in the public health system will probably be via Adult Metabolic Units (or similar name), with the person being referred to see a Metabolic Consultant (or similar title), and possibly see a dietician and genetic counselor.

Adult Metabolism Units are quite common now in major city hospitals (usually one covers the whole area). A guess is that while there may be Adult Metabolism Units in most major cities, TMAU still likely won't be on most of their lists yet.

TMAU 'patient service' in Wales
An example would be in Wales UK the consultant, dietician, and counselor approach is already set up at the University Hospital of Wales, Cardiff. They will likely send their samples for testing to Sheffield Children's Hospital.

TMAU patient referral service in Cardiff

Amazon revenue for MEBO Fund is now over $14

If you buy things from Amazon USA, don't forget that going through our Amazon banners will mean MEBO get about 5% of the purchase price at no extra cost to yourself.

So far MEBO have managed to raise over $14 at no cost to the purchasers, from the sale of $300 worth of goods. It's a great win/win way to raise money. Feel free to buy your usual Amazon purchases via the links. For instance, if you buy health products online usually.

Don't forget, no extra cost is charged to you the customer. Those in the UK, Canada, and Spain can go through the links in the sidebar. Thanks everyone.

Using an engineered probiotic for colitis : Possible use for FMO3 deficiency ?

An interesting concept to deal with FMO3 deficiency has been the idea of delivering amounts of FMO3 to the gut in a genetically engineered probiotic so that it can detoxify FMO3 substrates present in the gut, particularly in the colon (eg certain sulfides and amines). This would hopefully reduce the toxic load being absorbed into the bloodstream, reducing the need for such a load to reach the hepatic FMO3. It has also been speculated that perhaps FMO3 can be taken orally on it's own without having to be put into a probiotic, though this has never been tried and the consequences are unknown.

Going back to the notion of engineered probiotics, recently a paper was published that demonstrated this technique in mice to be used in gut inflammation disorders. With the engineered probiotic, the mice seemed to respond well.

Read More

International shopping for probiotics and other supplements

Cottage Washington State

Many sufferers from various countries in the world write to MEBO asking where they can purchase probiotics and other supplements at a reasonable price because they are not able to find them in their respective countries. I did a Google search using the keywords, "probiotics international shipping," and I ran across this website, Vitacost.com. They seem to have a decent selection, including the probiotics my son originally used when he first did the NIH recommended TMAU odor-management protocol,

International customers can use the Shipping Calculator on the lower left side of the checkout page to "Choose your country, and click "Calculate", to see if they ship to your country before giving your credit card information. The shipping cost seems to be very reasonable. However, before you spend your money on shipping costs, I recommend that you first check with your local pharmacy to see what products they carry or which they can order for you.

Read the ingredients well, and whenever possible, research the product online. Most supplements on this site have a Supplement Facts box with detailed information. For example, Jarrow Formulas Jarro-Dophilus EPS, has the following:

Read More

Presenting MEBO UK’s new Community Outreach Director – Stephanie Hinsley

It is with great pleasure that I announce Stephanie Hinsley’s acceptance of the position of Community Outreach Director of our not-for-profit Limited by Guarantee Company, MEBO Research (MEBO UK). Stephanie has posted in various forums with username, “Kitty” for a few years now.

Stephanie brings to the table a new approach in our Raising Awareness Campaign with a focus on,

"PARENTING"

What a great idea! Education begins in the home, and kids can learn about body odor conditions and how to treat a person with body odor and halitosis conditions in a sensitive manner. With this goals in mind, we also help parents learn about the conditions and understand the sensitivities involved. Excellent approach, Steph, thanks!

Using her own words, Steph has already "dashed off an introductory email to

mumsnet.com"

Firstly, I'd like to compliment you on the excellence of the Mumsnet site...
Now, as briefly as possible....I wonder if Mumsnet would help us with our cause...

We are a community of metabolic breath and body sufferers from various internet forums, and a charity, MEBO Research USA...We have now formed a UK branch and our Executive Director is Karen James, who as a teacher, has suffered discrimination in the work place. And as a mother has anxieties about a new generation of Trimethylaminuria Syndrome, which can be passed on. She bravely appeared on ITV's This Morning, which can be viewed on YouTube...............

Our goals are......

Education....(even many GP's are unaware, and diagnosis can be mental disorder, OCD and so) Overuse of antibiotics in childhood, and regulation and prescription of probiotics after antibiotics...

Bullying and discrimination (sadly even from school staff, and pupils)

Please help us in any way you can.

Warm regards,

Stephanie Hinsley (MEBO Community Outreach Director)

I know everyone in our community will welcome Stephanie with open arms and support her in her raising awareness campaign and in reaching out to the community to provide the much needed support all sufferers need to pursue a better life for ourselves and our offspring. If anyone would like to support her in this venture, please feel free to contact her at stephanie.hinsley@meboresearch.org.

Thank you Stephanie for your commitment to be proactive in MEBO Research’s programs. Welcome to our team!

María

Here's MEBO's Kitty for "Kitty"

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research