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

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

MEBO Research

Hypermethionemia plasma test : You can have blood sample taken at Biolab London for no extra cost

click to go to application form

Link to methionine test application form

Hypermethionemia blood test : You can have sample taken at Biolab London at no extra cost
With the co-operation of Nigel Manning at Sheffield Children's Hospital and the Biolab Medical Unit, we have started offering a plasma methionine test for £60 (plus shipping)

Hypermethionemia
Raised methionine plasma levels, known as hypermethionemia, has some historical anecdotal evidence that people can have a systemic odor problem due to this (and no other obvious health problem). At the moment there is not much medical papers been published on this, and indeed if we get a number of testers it will probably be the biggest 'study' of this subject.
Example paper :  1989 Body Odor due to intermittent hypermethionemia 

London : you can have sample taken at Biolab Medical Unit Central London
A major obstacle to people testing is that Sheffield Hospital requests the sample to be 'plasma only' on arrival.   This means volunteers need to not only provide a blood sample, but that the plasma must be separated from the whole blood as soon as possible. Thankfully, Biolab are separating the plasma for us, and in most cases samples taken in the UK and nearby countries should reach Biolab in good condition.

We also wish to point out that Biolab will kindly draw the blood at their medical unit in central London if someone wishes to test this way.

Outside UK
For those living in countries further away, it may be possible to do the test if you can have the plasma separated from the whole blood before transit, but we will need to double-check this (due to sample deterioration concerns). Any samples from outside the UK also have a £5 test-kit surcharge from Biolab (making it £65). You would also need to arrange shipping.

1 Tester already
So far we have one tester, who hopefully already has the kit. We will publish their result when we get it (minus private details, of course). The ref range Sheffield is starting with is
normal 0-40 umol/L
potential that odor could be due to association with methione : over 300umol/L

Anyone wishing to test can do so through our survey which has a paypal link at the end

Link : MEBO methionine test program form (cost £60 : £65 if outside UK)


Any questions about the program can be sent to ukmethioninetest@meboresearch.org

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)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

MEBO Research introduces new plasma methionine testing program in the UK

MEBO Research introduces
New Plasma Methionine Test Program in UK

MEBO Research is commencing plasma methionine testing in London with Clinical Biochemist, Nigel Manning, the only TMAU tester in the UK at Sheffield Children’s Hospital, and through Biolab Medical Unit.* MEBO UK's Scientific Director, Dr. Colin Harvey-Woodworth, BDS, is overseeing this testing program and conducting a study of the test results. Since currently trimethylaminuria (TMAU) is the only recognised and accepted type of systemic body odour, MEBO experts and sufferers alike believe there are other systemic odours that may stand alone or coexist with each other that are still yet to be discovered through research because the main complaint is of faecal body odour and faecal breath. As noted in MEBO’s website, it is MEBO Research's Mission to initiate formal scientific research into body malodour and halitosis conditions. In addition, MEBO pursues sufferer-driven exploratory studies from time to time in an attempt to identify new patterns in test results data to promote additional formal studies in an effort to discover new potential body odour conditions and their treatment.

Methionine plasma test application form

Quick notes on testing

• Initially, testing is open to UK residents and anyone who can attend Biolab London, due to sample handling.
• Test costs £60.
• Fill in requisition form and use PayPal button found after the survey to place order.
• Applicant will then be contacted by Biolab to arrange blood collection protocol.
• You can have sample drawn at Biolab Clinic in London.
• All other samples taken (eg by your Dr) are sent back to Biolab
• Sample is sent by Biolab to Sheffield Children's Hospital for analysis.

Biolab request that they are not sent emails.

Any questions on test should be to,
ukmethioninetest@meboresearch.org

On January 3rd, a post was written in this blog entitled, Methionine adenosyltransferase deficiency and body odour/halitosis. After reviewing scientific literature referenced below and after discussions with Nigel Manning, Dr. Colin Harvey-Woodworth and Biolab, it was determined that a possible candidate for exploratory study could be a test that measures the levels of plasma methionine. Nigel Manning kindly offered to make the methionine plasma test available to our group and Biolab will properly prepare samples, with Dr. Harvey-Woodworth overseeing the study, giving the result to the tester via email, and compiling data for future research.

MEBO Research’s hopes to identify new types of systemic body odours and halitosis conditions and to establish a list of disorders that began with the discovery of trimethylaminuria (TMAU).

In an attempt to determine whether hypermethioninaemia may be a contributing factor in some types of seemingly uncontrollable body odour and/or halitosis conditions, MEBO Research have commissioned this test to launch a preliminary data gathering effort that may either potentially rule out this theory or possibly support the initiation of future formal research. Since there is currently no funding for this exploratory testing, volunteer sufferers are given the opportunity to test for £60 plus return postage of the sample, when applicable, to Biolab in London.

MAT deficiency is step 1

Why methionine test ?
Hypermethioninaemia is a build up in the body of methionine, a sulphur-containing amino acid, usually due to a metabolising dysfunction. According to the Genetics Home Reference of the U.S. National Library of Medicine, “People with hypermethionine often do not show any symptoms. Some individuals with hypermethioninaemia exhibit intellectual disability and other neurological problems…and their breath, sweat, or urine may have a smell resembling boiled cabbage.” As we know from TMAU, the exact type of odour may vary in its presentation. Indeed, some TMAU experts believe there are coexistent problems that lead to the wide spectrum of presentation of the character of odour.
A study on hepatic methionine adenosyltransferase (MAT) depicts the case of a 31 year old with MAT deficiency, whose case provides evidence that “partial MAT deficiency is a benign disorder and that chronic hypermethionine (less than 1 mM) is not by itself detrimental to health.” Although some body malodour and halitosis sufferers may have been diagnosed with neurological disorder, such as learning disabilities, epilepsy, mental illness, and others, not all sufferers manifest these symptoms other than body odour and/or halitosis. Some of the enzymes involved in the methionine metabolic cycle are thought to cause serious health problems, but perhaps these cases are only the more 'severe' ones.

It is believed that the byproduct of this inefficient metabolic process may be dimethylsulfide, which is said to have a 'boiled cabbage' odour. The reason for testing methionine and not dimethylsulfide is that the methionine test is commonly available, more economical, and methionine is the fulcrum of this metabolic cycle, and so may point out a few enzymes at fault. The cycle can be seen in the figure on the right.

The arrangement is :

Read More

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