MEBO Database: A message from Karen

MEBO's Public Relations Director in the UK, Karen James, is working on expanding the MEBO Database of sufferers who may be interested in participating in research and testing. This database consists of sufferers who have already done their TMAU test, or any other diagnostic test ordered by their health care provider in pursuit of better understanding and management of odor condition.

At this time, we ask those who would like to be included in this database to be willing to share those results only when and if it is necessary for a particular study. As announced in this blog, there are currently two active research projects in place right now, so anyone wishing to share their results with MEBO to support this research could do so, as Karen mentions below.

Your privacy is of the utmost importance for MEBO Research, 

and all measures will be taken to protect it.

Below is a message from Karen:

MEBO Research have a database of people who tested for TMAU in any lab in the world and participated in the three MEBO Clinical Trials via their organisation. This list could be very useful for when scientists are interested in recruiting research participants at short notice. We are hoping that such an opportunity could arise very soon, and we want to be ready for it by having an extended list of potential volunteers with an odour problem. If you would like to be added to the MEBO database, which holds records of odour sufferers from around the world, then please send your details to maria.delatorre@meboresearch.org or karen.james@meboresearch.org. If you don't have a positive diagnosis, you can still send in your details and they can be recorded for future use.

Information needed is:
1. NAME as it appears on the test results forms,
2. Date of birth for identification purposes (helpful when names are common)
3. Address, including country, phone number, and email address. The address and phone number would facilitate the process of shipping kits if necessary.
4. Test type, i.e., TMAU test with NHS, MEBO Volatile Organic Compounds in Alveolar Breath Study, Biolab Study, tests noting hormonal imbalance or gut disorders, etc. (as many different types of tests they think may be significant to consider for an odor condition including, but not limited to TMAU).
5. TEST RESULTS

optional information:
Odor type and whether constant or intermittent
Triggers ( hormonal changes, such as menstruation, thyroid problems, trigger foods)
If positive for TMAU, did the TMAU diet work?
Do people experience allergic reactions to you?

Please be a proactive part of the MEBO Mission. Be part of the solution to the suffering those afflicted with these conditions are going through!

Thanking you all in advance and thanking Karen or her most influential work,

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

UK most popular mid-morning TV show looking for TMAU volunteer

<div style="float: right; margin: 0 0 1em 1em;">
<iframe allowfullscreen="" frameborder="0" height="250" src="//www.youtube.com/embed/qrW_QYk6zRI" width="300"></iframe></div>
<b>UK TV Channel : ITV</b>
<b>Programme : This Morning</b>
<b>Looking for TMAU diagnosed person to appear on show</b>
<b>This would be the 4th TMAU person on the show</b>

UK ITV show 'This Morning' is looking for a TMAU diagnosed person to appear on the show. They have contacted the tmau.org.uk website to ask for a volunteer. This would be the 4th TMAU person to appear on the show, following on from Claire, Karen and Ellie. Raising awareness of metabolic malodor is a vital need for the metabolic malodor community, as both the public and &nbsp;researchers are still mostly unaware of the concept.

The email to the tmau.org.uk owner said the following :

<div class="box">
We are looking for a case study of someone who has been diagnosed with trimethylaminuria and can talk on live TV about how it affects their life. We arrange all travel and can pay a fee. It will be for a Tuesday show over the next few weeks. It would be brilliant if you could help. Thanks!""

adrian.butler@itv.com

Adrian Butler | Newsdesk journalist, This Morning | ITV plc 6th Floor/Studio 8 This
Morning London Television Centre Upper Ground | London | SE1 9LT |
Tel: 020 715 74153

<a href="http://www.tmau.org.uk/chat/viewtopic.php?f=15&amp;t=1092" target="_blank">Link to post on tmau.org.uk forum</a></div>


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"The Tourmaline" By Karen E. James

The Tourmaline
By Karen E. James

The following are the MEBO affiliate links:

Amazon USA :
http://www.amazon.com/dp/B00MI3C4II/?tag=mri0a-20

Amazon UK :
http://www.amazon.co.uk/dp/B00MI3C4II/?tag=mere0d-21


Our very talented Public Relations Director and Raising Awareness Activist, Karen James, has written The Tourmaline, a "daring fantasy novel for young adults which, with humorous touches, juxtaposes urban life with a fantastical world where paranormal powers are used to both combat and perpetuate social inequality."

Let us show Karen our support and appreciation by purchasing her extremely reasonably priced book, only $1.99/USD and £1.22 includes VAT* & free wireless delivery.

We are very proud of Karen's work, both artistic and her MEBO Raising Awareness Campaign. Her mastery of the English language has been a powerful instrument with which she promotes a deeper understand into the essence of the plight of human rights. We thank Karen for her resolve to clearly bring to light the effects of social injustices, for her plight to change them, and for her very effectual advocacy to the MEBO cause. Let us show Karen our support and appreciation by purchasing her very reasonably priced book, only $1.99/USD and £1.22 includes VAT* and free wireless delivery.

About Karen

In addition to being a strong influential leader in the MEBO community, Karen is currently a school teacher in inner city London. She has a Dance Theatre degree from Laban and a M.A. in performing arts. She has also worked in the field of developing the arts within the community and believes that the arts (including writing for pleasure!) can help young people to develop. See Karen's biography and interview in Smashwords.

About "The Tourmaline"

Volatile but talented, London teenager, Aaron, distrusts most people apart from his incarcerated cousin. When he attacks a fellow pupil to defend his birth mother’s honour, his head teacher gives him a fixed-term exclusion, and his foster parents send him to a residential camp for mild delinquents close to mystical Stonehenge. Once there, inexplicably strange events start to occur...

Keywords: social issues, ecology spirituality, portals to other worlds, fantasy series book 1, urban teenage books, segregationism, resistance fighters, prejudice and racism, London 2014, inequality and injustice.

María

María de la Torre
Founder and Executive Director

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

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Volunteer Raising Awareness

http://www.mirror.co.uk/news/weird-news/ive-suffered-14-years-smelling-3380410

Join Ellie in Raising Awareness -
Anyone, anywhere in the world
SIGN THE BORC PETITION
using only username and email address

http://www.meboblog.com/2014/04/borc-public-awareness-campaign-petition.html

MESSAGE FROM KAREN:

Hi all,

In case you didn't already hear about Ellie's busy week this week raising awareness, here is the info:

http://www.tmau.org.uk/chat/viewtopic.php?f=15&t=995

MailOnline, 6 APR 2014

Topic with links to Daily Mail / Mirror articles and Radio interview

Ellie will also be on:
tomorrow This Morning 11.30 (Tuesday 8th) and Anne Diamond BBC Radio Berkshire 12.05.
Our thoughts and our thanks go with her!

Karen
Public Relations Director
Raising Awareness Activist

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil Blog (em português)




MESSAGE FROM KAREN:

Hi all

Ellie has not only done the above article for The Mirror but she is also on BBC Radio 5 live tomorrow at 8.40. Tune in if you can!

MailOnline, 6 APR 2014

Ellie was also on the front page of the Daily MailOnline, April 6, 2014.

Great job, Ellie. Brilliant work on our behalf!!

Best wishes
Karen

---

---

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

Subscribe for latest posts : Enter your email address:

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Please join today's email Raising Awareness Campaign

CHILDREN IN NEED DAY

PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.

A word from Karen James

I HOPE SOME OF YOU JOIN IN THIS CAMPAIGN TODAY-ESPECIALLY IF YOU LIVE IN THE UK.

Today is Children In Need Day in the UK. Children and teenagers who develop odour disorders are most definitely in need and suffer much more than those of us who developed the disorder as adults.

Nobody will give us a cure without us asking for it, so let's ask for it-it's just writing one e-mail and sending it to the contacts on the list (especially RCGP contacts)

COME ON!!!!

We could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

Another example of what could be written:

You are getting this email because your public service work allows you to do something about the terrible disease TMAU (Trimethylaminuria). You have the ability to help patients!
Many children suffer from TMAU with no improvement in diagnosis, treatment, therapy, and furthering of scientific research.
Sir Bruce Keogh is currently encouraging doctors to stay up-to-date with current medical developments. TMAU is one of them!
Please do whatever in your power to:

• Raise Awareness to General Practitioners
• Raise Awareness to the General Public
• Assist children/patients that have been bullied and ostracized
• Provide informative leaflets and posters about the disease to the general public and in the UCL Neurology Hospital

We need your help to do something.
Now is your opportunity.

---

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk

Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

THANK YOU ALL FOR YOUR FINE WORK!

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)

Tomorrow, NOV 16th, Raising Awareness Campaign Email Drive

A MESSAGE FROM KAREN JAMES
MEBO PUBLIC RELATIONS DIRECTOR

Gentle Reminder on November 16th:
Raising Awareness

Hi all,

We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

It is also 'Children In Need' fundraising time in the UK so I will re-word my e-mail to emphasise the fact that many sufferers of odour disorders are CHILDREN and that their social developments are seriously damaged by odour conditions.

In the USA people are sending letters of protest about proposed cuts to funding for rare disorders. Please see MEBO Research website for the NORD letter being sent in protest to these cuts and take action! Our disorders are considered 'rare' and any research to help us will take place under the umbrella term 'rare disorder'.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

Tomorrow, on NOVEMBER 16th 2012, we could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

---

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk

Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

A EURORDIS and NORD Member Organization

A MESSAGE FROM KAREN JAMES
MEBO PUBLIC RELATIONS DIRECTOR

Gentle Reminder on November 16th:
Raising Awareness

Hi all,

We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

On NOVEMBER 16th 2012, we could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

---

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk


Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk


General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk

Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

A EURORDIS and NORD Member Organization

RareConnect TMAU Webinar: Media and human rights for sufferers

Click orange 'play' button above to play the audio

Karen has worked as a part of MEBO Research and supports MEBO’s work. She thanks Rob and Allie for RareConnect and the person behind the scenes, who went through so much trouble to make this happen. She expresses that she feels this is a great opportunity for us to spread awareness.

How do we convince the public and medical community that we have a human rights issue?

Rare Connect is providing us with this platform to come together and stand up for our human rights.

Whether we have TMAU or another permanent malodor issue, we’ve all experienced disrespect from others or have been bullied or treated badly. Because we haven’t been labeled as disabled and since malodor conditions and TMAU are not widely understood, we’ve had to deal with the mistreatment from others, and therefore, been denied our human rights.

In order to make our voices heard, we need to join all the various communities who suffer from malodor disorders.

In order to make our voices heard, we need to join all the various communities who suffer from malodor disorders. We need cohesion amongst all of the forums, and Rare Connect is providing us with this platform to come together and stand up for our human rights.

In the workplace, for example, people are entitled to breathe clean air, but we also have the right to work and contribute positively to society. If we are denied this right, we suffer from psychological effects such as depression, especially the younger people. It affects not just our lives but our family and friends as well. We are basically a disabled community, but do not have disability rights.

We need to get rid of our defeated attitude. Obviously, change will not occur overnight. We need to get rid of our defeated attitude. Low self-esteem, guilt and shame contribute to preventing us from providing what we need. There are many people in our community who have dedicated themselves to the cause and because of their plight, many of us have benefited.


How can the media be used effectively in odor sufferer’s struggle for Human Rights?

Karen also knows of a good journalist who will find opportunities for us to speak.

There was a story in the media that used a negative example of TMAU, which was offensive and a big shame, since the program they were referring to has led to several people becoming diagnosed and helped to spread awareness about TMAU. Many sufferers got together and got the article removed.

The media may recognize the TMAU protocol as a method of controlling odor, but we all know this protocol does not give positive results to everyone.

Newspapers are known for changing headlines at the last minute, and there is no way of controlling it. Their main interest is to sell newspapers. The media will also misrepresent by giving inaccurate information. The people who need to be heard in the media are the people with these odor conditions because our experiences are accurate. The media may recognize the TMAU protocol as a method of controlling odor, but we all know this protocol does not give positive results to everyone. When being interviewed by the media, it’s important to state this known fact. This way people will not think we all can be cured of our odor by following the protocol and they will not expect more from us.

There have been brilliant articles and radio programs in the past two years. Our stories are interesting and authentic and will raise awareness and hopefully destigmatize the whole thing. If we’re clever and know what we want to say and represent ourselves in our own words, the medical establishment will take us more seriously and reflect that in their presentations.

We have to know what we want to say to the media and be decisive and not be pressured to divulge our private lives.

We have to know what we want to say to the media and be decisive and not be pressured to divulge our private lives. Karen encouraged us to contact her if we would like to do a story and she would help to make it happen. Karen also knows of a good journalist who will find opportunities for us to speak.

Be careful when mentioning that many sufferers suffer from depression and thoughts of suicide.

Be careful when mentioning that many sufferers suffer from depression and thoughts of suicide. The media may sensationalize this and say you are suicidal. Also, if you mention feelings of depression, be aware that your employer may look at this as mental instability. If you have found a miracle cure and the story sells, make sure to say that this cure will not work for all sufferers.

We’re a larger community than we think. There are lots of people who have not been identified or recorded. Sixty years ago, no one heard of Autism, but it has become a very common diagnosis today. Odor disorders may be much more common in years to come, which may be due to genetic disorders. This is another reason to raise awareness so people can make choices on how they want to raise their families.

There’s a lady in the community who is writing a book, not just about her odor, but also about other issues in her life. She’s a brilliant writer, and hopefully someday she’ll be on television discussing her book. Writing our stories for publication is another way of getting noticed by the media.

Summary transcript by MEBO Volunteer

Q & A SESSION

During a Q&A, Rob asks how someone living in a small town would approach the media to get their story told. Karen stated that many articles have been written in women’s magazines, and she feels this is an excellent way of getting the word out. Magazines are placed in doctor’s and dentist’s waiting rooms, and are not usually thrown away. Newspapers, however, are usually discarded. She adds that internet articles are like magazines in that they can be referred to and have more lasting power. In addition, radio interviews are equally as successful.

Feel free to contact Karen at karen@meboresearch.org

---

A EURORDIS and NORD Member Organization 

EMAIL PROTEST CAMPAIGN TODAY

<div style="text-align: center;">
<span class="Apple-style-span" style="color: #990000;"><span style="font-size: 160%; font-weight: bold;">TODAY IS THE DAY OF OUR
EMAIL PROTEST CAMPAIGN</span></span></div>

<a href="http://www.meboblog.com/search/label/Raising%20Awareness%20Campaign;" target="blank"><img alt="halitosis research" border="0" id="BLOGGER_PHOTO_ID_5591589693793567890" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnB7ljQFDXpQhYBLJ4UbeHir96-BHmOfjfHACULqkLc0yLxfwDuL2gnawHP_LXep6ZWWXH9XTEZvuMqfgxBUqzq7U5pS7CYRufjnrPhL4tRmUbI6jyw9UGNXvNbS56YxOZlmICsi8cPy53/s320/MEBO-LOGO-FIN1%2528smallest%2529.jpg" style="cursor: pointer; float: left; height: 125px; margin: 0 10px 10px 0; width: 103px;" /></a>
<span style="font-size: 180%; font-weight: bold;">P</span><span style="font-size: 110%; font-weight: bold;">lease copy and paste the following and email it to the links below. You are invited to modify, add, or omit whatever you like, or you make just copy and paste.  Please send an email to each link separately, in order to avoid going on the receiver's Spam folder.</span>

<blockquote>

I was extremely disappointed to learn that the grant application for research into the intestinal bacteria of TMAU (Trimethylaminuria) patients and patients with foul-odour-producing metabolic disorders was turned down by the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into potential cures and treatments for the condition of Trimethylaminuria as a matter of urgency.

Former campaigns had greater effect when several e-mails and letters were received simultaneously. Our community would be very grateful if you could support us in this venture,


With kindest regards,
[YOUR NAME]</blockquote>

<span style="color: blue;"><span style="font-size: 110%;">
linda.willmott@headoffice.mrc.ac.uk <mailto:linda .willmott="" headoffice.mrc.ac.uk="">
corporate@headoffice.mrc.ac.uk <mailto:corporate headoffice.mrc.ac.uk="">
felicia.rodriguez@headoffice.mrc.ac.uk <mailto:felicia .rodriguez="" headoffice.mrc.ac.uk="">
GPSD@headoffice.mrc.ac.uk <mailto:gpsd headoffice.mrc.ac.uk="">

GrantsPostAward@ssc.rcuk.ac.uk <mailto:grantspostaward ssc.rcuk.ac.uk="">
grants@headoffice.mrc.ac.uk <mailto:grants headoffice.mrc.ac.uk="">
GrantsMRC@ssc.rcuk.ac.uk <mailto:grantsmrc ssc.rcuk.ac.uk="">
Claire.Wyllie@headoffice.mrc.ac.uk <mailto:claire .wyllie="" headoffice.mrc.ac.uk="">
Rebecca.Hodges@headoffice.mrc.ac.uk <mailto:rebecca .hodges="" headoffice.mrc.ac.uk="">
amt@headoffice.mrc.ac.uk <mailto:amt headoffice.mrc.ac.uk=""></mailto:amt></mailto:rebecca></mailto:claire></mailto:grantsmrc></mailto:grants></mailto:grantspostaward></mailto:gpsd></mailto:felicia></mailto:corporate></mailto:linda></span></span>
<hr />
<div style="text-align: center;">
<span class="Apple-style-span" style="color: grey;"><span style="font-size: 160%; font-weight: bold;">For more information on the Raising Awareness Campaign,</span> <a href="http://www.meboblog.com/search/label/Raising%20Awareness%20Campaign" target="blank"><span style="font-size: 160%; font-weight: bold;">see posts.</span></a></span></div>
<hr />

<div style="text-align: center;">
<span class="Apple-style-span" style="color: #990000;"><span style="font-size: 125%; font-weight: bold;">THANKS TO ALL WHO PARTICIPATE
from around the world!</span></span></div>

<b style="font-size: 19px;"><span style="color: #990000;">María</span></b>

<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnB7ljQFDXpQhYBLJ4UbeHir96-BHmOfjfHACULqkLc0yLxfwDuL2gnawHP_LXep6ZWWXH9XTEZvuMqfgxBUqzq7U5pS7CYRufjnrPhL4tRmUbI6jyw9UGNXvNbS56YxOZlmICsi8cPy53/s1600/MEBO-LOGO-FIN1%2528smallest%2529.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5591589693793567890" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnB7ljQFDXpQhYBLJ4UbeHir96-BHmOfjfHACULqkLc0yLxfwDuL2gnawHP_LXep6ZWWXH9XTEZvuMqfgxBUqzq7U5pS7CYRufjnrPhL4tRmUbI6jyw9UGNXvNbS56YxOZlmICsi8cPy53/s320/MEBO-LOGO-FIN1%2528smallest%2529.jpg" style="cursor: pointer; float: left; height: 63px; margin: 0px 10px 10px 0px; width: 53px;" /></a><span style="font-weight: bold;"><span style="font-size: 16px;">María de la Torre</span></span>
<span style="font-weight: bold;"><span style="font-size: 16px;">Founder and Executive Director</span></span>
<span style="font-weight: bold;"><a href="http://meboresearch.org/aboutmebo.html" target="new"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5660762123933721122" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4JKTm2OpTMQn5-zJZN62LJyTfg6wH0K-XlAEB1npUfYqhRNaH6sD0cg0zUDGvz_pr4EcZvkawFMvDo5exTNIr8ZPX_OGqZHcd9y20_7XPZj8caifK5Mt3Ck9S8gRA_doPpno59IazIB3e/s200/mebo-type3+for+signature+box.jpg" style="cursor: pointer; height: 15px; width: 188px;" /></a></span>
<a href="http://olorcorporalyhalitosis.blogspot.com/search/label/MEBO%20Research" target="blank"></a><a href="http://meboresearch.org/" target="blank"><b><span style="font-family: &quot;courier new&quot; , monospace; font-size: 23px;"><span class="Apple-style-span">A Public Charity</span></span></b></a>
<a href="http://meboresearch.org/" target="blank"><span class="Apple-style-span" style="color: blue;"><span style="font-weight: bold;">www.meboresearch.org</span></span></a>
<a href="http://brasil.meboresearch.org/" target="new"><b class="Apple-style-span" style="color: blue;">www.brasil.meboresearch.org</b></a>
<b class="Apple-style-span" style="color: blue;">maria.delatorre@meboresearch.org</b>
<a href="http://www.meboblog.com/" target="blank"><b class="Apple-style-span" style="color: blue;">MEBO's Blog (English)</b></a>
<a href="http://olorcorporalyhalitosis.blogspot.com/"><b class="Apple-style-span" style="color: blue;">El Blog de MEBO (español)</b></a>
<a href="http://brasil.meboresearch.org/blog/" target="new"><b class="Apple-style-span" style="color: blue;">MEBO Brasil - Blog (Portuguese)</b></a>
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<b>A</b> <a href="http://www.eurordis.org/" target="new"><b>EURORDIS</b></a> <b>and</b> <a href="http://www.rarediseases.org/patient-orgs/current" target="new"><b>NORD</b></a> <b>Member Organization</b><a href="http://www.rarediseases.org/patient-orgs/current" style="font-style: normal;" target="blank"> </a> <a href="http://www.rareconnect.org/en/community/trimethylaminuria" style="font-style: normal;" target="blank"><img border="0" height="97" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4KKvoLgJHgM36WkRIKTxXA9Pd6GO51cr1dIQS1LZp5zGV5tHk-xCYgQ9XeKw-CmbCd_qt5-wvtBDt28anF6BwSIuVEWwzmA_mpYkAEKf2naQqThW6lN3uS6Dsb_BVr_5WervkQwyhpPs/s320/mebonordeurordis.jpg" style="cursor: hand; cursor: pointer; float: center; height: 84px; margin: 0 10px 10px 0; width: 320px;" /></a></div>
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Karen James, MEBO UK's PR Director publishes article in the Oxford Journals, InnovAiT

It is with great pride that I announce one of the greatest achievements MEBO UK’s Public Relations Director, Karen James, has accomplished to date - to be published in the Oxford Journals of the Oxford University Press, InnovAiT.


Full Text:
http://rcgp-innovait.oxfordjournals.org/cgi/content/full/ins093?ijkey=bF4nglzYtAz4Cbf&keytype=ref

PDF:
http://rcgp-innovait.oxfordjournals.org/cgi/reprint/ins093?
ijkey=bF4nglzYtAz4Cbf&keytype=ref

My body produces an offensively pungent chemical
Karen James
InnovAiT 2012; doi: 10.1093/innovait/ins093

It was only one year ago, on March 28, 2011, that Karen spearheaded the International Raising Awareness Campaign in the UK medical system calling sufferers from around the world to write testimonials for her to submit to the UK Medical Research Council, the General Medical Council, British Medical Association, Royal College Physicians, and more. Our whole community is very grateful to the many sufferers who participated in this campaign. As a result of this very diligent determination on her part, Karen has accomplished, in only a years’ time, not only to work with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence, to publish 10 body odor related uncertainties / questions, now found in the Library of NHS UK database, about the effects of treatment for TMAU, but now she has her own article published in InnovAiT.

This is a perfect example of how a sufferer standing up and taking action can bring about significant change. Imagine what it would be like if each sufferer stood up and took action in his or her own way! We would be well on our way toward finding a cure if this were the case.

An excerpt from this article:

The GP perspective
It is challenging when faced with a patient that you do not know how to
help. The curriculum is vast and reflects the level of knowledge GPs have to acquire, and maintain, over their careers. It is inevitable that you will experience patients from time to time with problems that will stretch your knowledge to its limits. As Karen has alluded to throughout this article, it is important to listen to patient concerns, be open-minded, and be prepared to look things up and/or take advice from both primary care and specialist colleagues if you feel that you are treading on uncertain ground.

A WORD FROM KAREN:
We should never allow ourselves to be dragged down by the scepticism of fellow sufferers regarding ‘raising awareness’ campaigns; thanks to the UK raising awareness campaigns last year, synchronised e-mailing to the Royal College of General Practitioners and follow-up letters and calls, I managed to publish an ‘odour article’ in ‘Innovait’, which is a journal for graduating doctors published by the RCGP.

We all know that unsolicited manuscripts are most often rejected. I was lucky because somebody at RCGP forwarded one of my raising awareness e-mails to the Innovait editors, perhaps with a suggestion that they feature TMAU in an edition of the journal. Without this initial recommendation I think my article would not have been published so it is thanks to all those people who joined me in sending e-mails to the UK medical establishments and thanks to all those people who allowed me to use their true accounts of ‘living with odour’ for the raising awareness campaigns. Also, the sharing of information during the meet-ups was also very helpful so thanks to those who organise the meet-ups and those who attend them. Several months later, we have a small (but significant) result.

The original article had been written for (and already rejected by) newspapers so it was not suitable for a medical journal. However, the editors were incredibly supportive and helped me with the lengthy process of editing, re-editing, rearranging the content of the article so that all emotive adjectives were removed, the underlying critical tone of the medical profession was diminished and a scientific diagram, courtesy of Dr Elizabeth Shephard, was included.

Odour conditions are covered by the UK Disability Act in that you can be classified ‘disabled’ for conditions which adversely affect your day-to day activities.

Although 800 words were cut, I hoped the main points would still be included: the lack of understanding of most GPs and failure to diagnose; the danger of GP’s denying the problem; the need for research into odour conditions; the need for sensitivity and mental health support for younger sufferers particularly; the expense of nutritional supplements for sufferers who are unemployed or under-employed because of the condition.

E-mail discussions with the team of RCGP’s Innovait GPs were very interesting and confirmed:

IF YOU ARE UNEMPLOYED BECAUSE OF YOUR ODOUR CONDITION
Odour conditions are covered by the UK Disability Act in that you can be classified ‘disabled’ for conditions which adversely affect your day-to day activities. It follows that unemployed sufferers in the UK should be entitled to disability benefits.

IF YOU CANNOT AFFORD SUPPLEMENTS AND PROBIOTICS
The GPs questioned the validity of my statement that TMAU sufferers find it hard to get supplements on prescription. They clarified that any GP is able to prescribe calcium supplements etc. (obviously, it can be cheaper to buy certain supplements at the pharmacy if you are employed) and that consultants have the greater power of being able to prescribe virtually anything they consider relevant to the patient’s wellbeing.

CALL TO ACTION:

Imagine what it would be like if each sufferer stood up and took action in his or her own way!

Each sufferer who has not yet been tested for TMAU is invited to print Karen's InnovAiT article and Dr. Shephard's NIH articles on Differential Diagnosis of TMAU, in which the diagnosis of Transient TMAU (intermittent odor) is introduced, noting its very reputable source, and take it to your respective GP to ask him/her to prescribe the TMAU Test. By doing so, not only will you get your test, but you will also carry on the torch of the Raising Awareness Campaign. Even if your doctor tells you that he/she does not detect your odor, Drs. Shephard and Phillips’ article clearly states that it could be transient (intermittent odor – not always present).

In an effort to show strength in unity of sufferers in the UK, this article makes mention of the three primary sufferer support forums/websites that this blog links to on the menubar Community tab, the new UK TMAU Website, Arun's breath and body odour forum, and MEBO's website. On behalf of our international community, we take our hats off to you Karen, for tapping into the medical community on our behalf. We also would like to express our heartfelt gratitude to Dr. Elizabeth Shephard for her contribution to this article and for all she has done for our community. THANK YOU!

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

Take action to Raise Awareness today, Rare Disease Day!

Please click on this link
See examples below of emails written today.
Please feel free to copy and paste excerpts to create your own.

TODAY IS THE DAY TO TAKE ACTION
AS A UNITED COMMUNITY!

As mentioned in previous posts, our international community at MEBO Research and all sufferers from around the world have been "called to arms" to prepare to join the National Organization for Rare Disorders (NORD) and Eurordis in important advocacy initiatives organized for the Rare Disease Day, today, February 29, 2012. MEBO urges sufferers to take a moment to participate in the two mass email/mail campaigns aimed at the authorities in the US and UK that could be most influential in assisting us in our quest to initiate research and find a cure.

**You may include a link to the TMAU paper written by Dr. Elizabeth Shephard for MEBO Research, http://www.meboresearch.org/Trimethylaminuria%20Paper%20by%20Dr.%20Elizabeth%20Shephard.pdf **

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED STATES:

"In solidarity with EURORDIS and NORD""

By following the easy steps in this virtual tool, you can let your elected officials know that rare diseases are important to you! NORD has provided a sample letter for you, ready-to-go, though we certainly encourage you to take an extra moment to personalize your message and make it resonate.

Once you complete this action alert, your message will be instantly and electronically sent, though you have the option to print and mail your message if you prefer. You may choose to send your message to:
- The President and Vice President of the United States
- The two Senators who represent you in the US Senate
- The Congressperson who represents you in the US House of Representatives
- Your State's Governor and Lt. Governor
- Your representatives in your state's legislature

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED KINGDOM:

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

UK Contacts

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Media
thismorning@itv.com


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk


Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

USA Infectious Diseases Division Office, Northwestern University
gnoskin@northwestern.edu
Gary A. Noskin, MD Professor, Medicine, Infectious Disease Division at Northwestern University.