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Blog Archive

Saturday, May 19, 2018

Mental Health: A step closer to the right diagnosis

A step closer to getting the right
The difference between Trimethylaminuria,
PATM, Other Malodor conditions and Olfactory Reference Syndrome

MEBO Mental Health director

Disclaimer: Please be aware that the information shared in this article is not a replacement for advice, diagnosis and treatment from a professional, such as a health practitioner, therapist, psychologist or psychiatrist. If you want to talk and need support from a professional, I would recommend you to contact your doctor for a referral or find licensed professional in your country.

"...feelings of shame, social rejection, depression, anxiety and isolation"
Our MEBO Health Director, Crissan Rosalia, Health psychologist, MSc., is always thinking of ways to help us cope with the emotional consequences of the overwhelming uncertainty that comes with the absence of diagnostic possibilities for malodor and PATM conditions around the world. We realize that this is due to the lack of research resulting in the lack of knowledge and understanding on the part of the scientific and medical communities around the world.

"Are the symptoms caused by a physical or psychological condition?"
Crissan has written the following 13 page paper in order to help us put into perspective the events and resulting emotions facing sufferers on a daily basis, from the, "feelings of shame, social rejection, depression, anxiety and isolation" to the lingering question sufferers, families, and health providers ask, "Are the symptoms caused by a physical or psychological condition?" The following are excerpts from the Introduction section of Crissan's paper:

Finding out what the cause is can help sufferers take the right steps to get adequate diagnosis, treatment and support. However for people suffering with symptoms of body odor and social isolation, it can a very difficult and long road to find out what is causing their symptoms. Some people may have doubts, because they are not able to detect the symptoms themselves and are dependent on the reactions, social cues and comments of people around.

Families and friends might deny the symptoms because they are not able to detect the odors either. Sufferers are then judged to be mentally unstable and are not believed by their families. However, strangers and people on the street might comment on odors, coworkers might harass, complain or isolate the person who is suffering. All of this can lead to a lot of distress and an increase in frustration and isolation for the sufferer who is very aware that something is wrong but is left alone in his or her search for answers.

When sufferers consult a professional they are quickly labeled with having a mental illness such as Olfactory Reference Syndrome (ORS), Delusions or Depression. This
might inhibit sufferers of consulting a professional and this can also delay the process of taking the necessary steps.

In this article, we will discuss different malodor conditions, PATM and a couple of psychological conditions, such as ORS. The aim of this article is to illustrate the causes, similarities and differences of these different conditions and the importance of getting the right diagnosis, which can lead to an adequate treatment plan and alleviation of malodor symptoms, whether the nature is psychological or physical.

PART 1: Different physical malodor conditions, symptoms and diagnosis includes Primary and Secondary Trimethylaminuria (TMAU), Other Metabolic conditions, Bromhidrosis, Fecal Body odor, Halitosis, Diagnosis, Psychological impact.

PART 2: PATM, What is PATM and how is it diagnosed?

PART 3: Psychological malodor conditions, Olfactory Reference Syndrome (ORS), psychological effects of ORS, Phantosmia, Cacosmia and Hallucinations.

PART 4: How do you know if your condition is physical or psychological? Steps to take.

See all of Crissan's posts in this blog (scroll down and click on Older Posts to see them all) with this link.

I'm certain I speak for our whole international community when I thank Crissan for her volunteer work to our community with the countless hours she dedicates to writing papers such as this one for our benefit and well-being. Thank you, Crissan!


María de la Torre
Founder and Executive Director

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Tuesday, May 15, 2018

Karen's UK Campaign : Write to MP's

Karen James from MEBO UK recently attended a Genetic Alliance 'how to campaign' workshop in London, to get tips on how to promote awareness and get things done about Rare Diseases.

2 main factors in awareness and change are :
Political help
Ad campaigns

Here Karen writes on Political help.
This is based on writing to UK MP's, but could apply to any country.

Following on from the 'How To Campaign' workshop organised by the Genetic Alliance, I propose that everyone sends a, very short, written letter to their local MP asking them to pose a question in parliament. All of us in the UK have a local MP who can represent us in parliament
List of UK MP's offices

Our former e-mails have already done a lot to raise general awareness. I know this because some people have sent me the replies they received from MPs. True, the replies are the usual fobbing off, but the information we wanted to share has been very clearly conveyed, so well done to everyone who took part in that initiative. I think if great numbers of us follow up with a written letter asking the MP to pose a question, that could have some effect.

I think testing is a major issue. Without a proper test recognising our conditions, we actually have very little power, especially in cases where we need to prove discrimination. Moreover, hundreds of 'invisible/non-diagnosed' people still have no support whatsoever. There is no point in getting referrals from a GP if the test provided by the NHS isn't useful. We must keep fighting for this situation to be improved first and foremost.

What you may be thinking right now:

I can't be bothered to do this; it is futile...
I say, a united effort with everyone working simultaneously could have an effect. Non-UK people have taken the time to write to our UK MPs, so why can't you?

There aren't enough of us to make an impact...
There are a great many of us with this disorder around the UK in different constituencies, and if every person contacts the local MP, that is great. One MP, Caroline Dinenage, showed some interest but I'm not in her constituency. If anybody is in Gosport, please try to contact her!

I'm sure somebody else will do it so I'm not needed...
I say, that is just laziness. We take the time to write long messages moaning about our lives, so why can't we put a similar effort into trying to do something  positive? Some people at MEBO are trying hard to move research opportunities forward. Here in the UK, we can support that by trying to establish a better national test programme.

I want to remain anonymous...
I say, get over it.

I haven't got the time...
I say, a short letter to be printed out and put in an envelope and sent with a stamp isn't a mammoth task.

Please copy/modify mine (below) if you wish:

I am writing regarding metabolic malodour disorders such as Trimethylaminuria, which is a socially disabling, alienating malodour condition.

Producing fecal, sewage, rotten egg or fish odours has a devastating impact on all aspects of the odour sufferer’s life. In spite of this, metabolic malodour disorders are regarded as trivial by some medical practitioners because they are diseases without a death end point. Thus, ostracised, bullied, vulnerable people are left without support and, therefore, at risk of suicide. The UK Strategy for Rare Diseases (Page 15) claims: The Government is committed to shortening and improving the quality of the diagnostic journey for rare disease patients.  However, our community has yet to see evidence of this.
I wonder if you could raise this question in Parliament please:

To ask the Secretary of State for Health, whether his Department will encourage the NHS to establish a comprehensive, accurate and relevant test for metabolic malodour disorders such as Trimethylaminuria so that sufferers can be diagnosed and their human rights protected.

Also, could you please let me know if I may attend one of your surgeries to discuss this further.

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Tuesday, May 8, 2018

MEBO awarded a study grant from UBIOME

MEBO has been awarded a grant from Ubiome.
It was awarded via the Ubiome Academic Grant Program.
The award means a study can be done with a number of free Ubiome kits.
It will explore the MICROBIOME using the Ubiome stool test.

An outline of a potential study was put forward to Ubiome by MEBO's Prof Irene Gabashvili and accepted :
This involved 30 volunteers getting 2 Ubiome stool test kits.

"The proposed study would identify microbial communities associated with flare ups and remissions of systemic malodor".
This will now include 'People are allergic to me' (PATM).

Talks are underway about formatting a study.

Some ideas that have been discussed :
Ubiome offered to make it 4 tests per person.
The current Ubiome stool test is bacteria only, and does not include fungus (e.g. candida). Ubiome will look to include candida (albicans ?).
It will also be asked if they could include small parasite microbes. 

Planning the study is at a very early stage. One big question is how to identify between remission and flare-ups, as many cannot smell themselves so cannot monitor their condition.

Prof Gabashvili blog post and survey
Irene has begun formulating a questionaire  for the study, and has wrote a post on the Aurametrix website on the study.
Prof Gabashvili Aurametrix post on the study : link
Currently the survey is for discussion purposes only (not to be filled in).

This is early formulation of a study with discussions with Ubiome. 
It should be kept in mind it has many limitations, not least due to the early stages of microbiome knowledge and testing, as well as cost. and being limited to this test only.  
Ideas and comments are welcome.  

Excerpt from original proposal put forward by Prof Gabashvili and accepted :

The proposed study would identify microbial communities associated with flare ups and remissions of systemic malodor.

Human odorprints, mostly owing to the microbiome, have proven their value as biomarkers of health
and environmental exposures.
In recent years, microbial networks responsible for localized malodors (e.g., halitosis [1,2] and axillary
odor [3,4]) have been mapped by using next generation sequencing approaches.
Intestinal microbes responsible for psychologically debilitating systemic malodor (whole-body and
extraoral halitosis), however, remain to be identified. Even a relatively straightforward disorder of
choline metabolism trimethylaminuria (TMAU) is thought to exhibit complex host-gene microbiome
interactions [5] and has not been sufficiently studied.
Mapping gut microbiome is needed to understand human metabolic disfunction, make proper dietary
recommendations and develop targeted treatments such as microbial therapies [6-8]. Our preliminary
analysis of culture-, PCR- and 16S-RNA-based data found several Operational Taxonomic Units (OTUs)
potentially linked to systemic malodor. Proposed controlled pilot study will provide a more
comprehensive evaluation and, combined with our prior data [9-12], will help to develop new therapies and treatments.

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