PROTEST DAY 28TH MARCH

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PROTEST DAY 28TH MARCH

Postby malory » Tue Mar 22, 2011 10:09 pm

Some of us London TMAU sufferers met up on Friday 18th March.

We have 5 testimonials and another 4 on the way.

The content of the testimonials generally includes:
a succint definition of TMAU; our personal experiences of living with the condition and the limitations it puts upon us; the need to educate GPs about TMAU so that diagnosis can occur promptly; our (often negative) experiences with the medical profession; the inadequacy of the current treatment protocol and the need for medical research into finding a proper cure.

One member has also mentioned including the tendency to suicidal thoughts, which many TMAU sufferers have, as evidence of the severity of the condition.

We decided that the main priority is to raise awareness amongst doctors so that people do not get fobbed off when they ask for help. We also talked about pushing for medical research. One member said that Dr Chris Steele on ITV has shown interest in TMAU and we thought it may be a good idea to contact him.

We decided to send off the testimonials together (as a pack) and that individuals could also e-mail their testimonials on the same day. The idea is that the targeted people will receive e-mails and hard copies of our words almost simultaneously. Below is a list of targeted people.

We could aim for getting the letters etc to reach their destinations on monday 28th march. perhaps we could all bombard people with e-mails on that day too.

ON MONDAY 28TH MARCH EVERYONE COULD E-MAIL THE CONTACTS BELOW WITH THEIR OWN EXPERIENCES OF LIVING WITH TMAU. PERHAPS THIS COULD BE AN INTERNATIONAL EFFORT. It could happen regularly, say 4 times a year, a day in which we all e-mail/write/call people to make them listen to our cause.

I guess you have already done this before to no avail and I am not claiming to reinvent the wheel but we need to keep up the pressure and put our energy into changing things.

Here are some places to send testimonials/letters. PLEASE POST HERE ANY OTHER IDEAS. One member is experienced in lobbying MPs so our next step will be enlisting the suppport of an MP.

Medical Research Council
Linda Willmott 020 73952312
14th Floor
One Kemble Street
London WC2B 4an

Linda.Willmott@headoffice.mrc.ac.uk


General Medical Council 0161 9236602
Education and Training Committee
Jane Dalacre
350 Euston Road
London NW1 3JN

education@gmc-uk.org
publications@gmc-uk.org
gmc@gmc-uk.org
gmctoday@gmc-uk.org

British Medical Association
BMJ/BMA News (weekly publication for drs)
bmj.com 020 73874410
bma-library@bma.org.uk

Royal College Physicians
Professor Humphrey Hodgson (has published papers on liver disease)
11 St Andrews Place
Regents Park
London NW1 4LE

education-courses@rcplondon.ac.uk
02030751539

Dr Chris Steele
This Morning 11th floor
London Television Centre
London SE1 9LT

thismorning@itv.com
08000304044
malory
 
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Re: PROTEST DAY 28TH MARCH

Postby admin » Fri Mar 25, 2011 9:07 pm

Hi Malory,

Thanks for the update and the idea's.

Sorry I got to read it so late after posting - I would guess a fair few of members have missed this as well.

I will email this info to all of our members so everyone sees it.

Cheers.
admin
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Re: PROTEST DAY 28TH MARCH

Postby malory » Sun Mar 27, 2011 9:36 pm

Thank you admin!

I sent off/posted 7 testimonials to the contacts above on Friday.
I have also just e-mailed my own testimonial to the same contacts.

PLEASE DO THE SAME EVERYONE!
This is what i wrote if anyone is interested:
Hello,

My name is Karen James and, after 13 years of confusion and despair, I have been diagnosed with trimethylanuria, TMAU, a liver disorder which results in a lack of the enzyme FMO3 needed to break down choline in food. Without this enzyme, I am condemned to producing a strongly offensive breath odour which impedes all of my social interactions, limits my career ambitions and encroaches upon my lifestyle in the most distressing way.

The failure of the health system to support me throughout my ordeal is largely due to their ignorance of the condition. As my GPs did not know of its existence, I was sent to counsellors and told that I was halitophobic and exaggerating my problem. Not only was I having to cope with ostracism and humiliation in my daily life, but I was also led to a state of desperation, almost suicidal, by the inability of those I sought help from to acknowledge my disorder. I would like to ensure that nobody has to suffer what I had to for over a decade by disseminating the basic information about this disorder to all GPs in the UK. In this modern era of high technology and multiple forms of communication, I can see no obstacle to relaying this information quickly and cheaply to all GPs. This objective can and must be achieved immediately; some adolescents develop this disorder and, throughout their formative years, are left in torment if their condition is undiagnosed.

My second aim is to secure effective research into curing this disorder. The current 'treatment protocol' is largely ineffective and also harmful to the TMAU sufferer over a long period of time; the diet is incredibly restrictive and is based on depriving the body of an essential nutrient, choline. The repeated use of strong antibiotics throughout the sufferer's ifetime , the other strand of the treatment protocol, also has a detrimental effect on the body.

TMAU is not a common disorder BUT there are many people who have yet to be diagnosed. There will be many more who will develop the disorder and have their lives destroyed by it. This is because there is no real research into the causes of the disorder, although it has been linked with overuse of antibiotics following an infection. If the latter is the case, then we can predict that the number of cases of TMAU will steadily increase given that antibiotics are widely used in our society.

Anyone can develop TMAU, regardless of how healthy your lifestyle or how cautious your use of medication. If you were to develop it, you would not be satisfied with the current lack of interest in it and the current disregard for its seriousness.

I implore you to forward this e-mail rather than to delete it and, if possible, to act upon it by helping to educate the medical profession.

I thank you at least for having read it,
Karen James
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Re: PROTEST DAY 28TH MARCH

Postby idealist » Mon Mar 28, 2011 5:07 pm

Hello Malory/Karen,

I would love to write testimonial, however I have been told (by a specialist) that I do not have TMAU. Although my smell is worse when I eat fish, eggs and the smell is the same as many members have described.

I think what you are doing is great and I hope people/professionals start taking Tmau seriously. It is a condition that can cause paralysis (due to comments and mental thoughts) effectively it affects one's whole life. In many ways TMAU is a disability and needs more exposure.
x
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Re: PROTEST DAY 28TH MARCH

Postby Funky_aroma » Mon Mar 28, 2011 7:34 pm

hi, malory

i have just email my own testiomonial to all the adresses above.

I hope everyone does the same too so we can make a differnce for the better.

Thank you admin!

funky_aroma
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Re: PROTEST DAY 28TH MARCH

Postby Ellie Girl » Wed Mar 30, 2011 1:54 pm

Hi Malory,

I did the same on Monday.

thanks for starting this off!

Ellie x
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Re: PROTEST DAY 28TH MARCH

Postby malory » Thu Mar 31, 2011 2:03 pm

Well done everybody!

I got a slightly hopeful reply from Felicia Rodrigues at the Medical Research Council today. She states that they are going to look into whether they have ever funded research into this area.

The GMC are less receptive. A work in progress...

Idealist, everyone can participate in this letter-writing/e-mailing regardless of whether or not they have tmau or mebo or no diagnosis at all. The important thing is that we raise awareness about smelly conditions so that those ignorant people out there will stop thinking we are unhygienic and stop buying us perfume!
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