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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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EURORDIS and
NORD Member Organization
See RareConnect

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Blog Archive

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Monday, October 14, 2019

19Oct 11am London : TMAU meeting update by Karen

An update by Karen about the TMAU Meeting in London 19 Oct at 11am.
More details have been given.
All are welcome.
Dr/Prof Elizabeth Shephard and Dr Azara Janmohamed are giving up their Saturday morning to have a meeting with us. We only have 2 hours to demonstrate that our community need help, so it would be good if a large group of us could attend at:

St Mary's Hospital,
SMCA Clinical Lecture Theatre, Level 2, Cambridge Wing,
Praed St, 
Paddington, London W2 1NY

 from 11am to 1pm.

Any odour sufferer is welcome to attend. An email to confirm attendance would be much appreciated: karen.james@meboresearch.org

CONTENT OF MEETING As stated in my original message, one focus of this short meeting will be discussing the need for a more comprehensive, useful test. For this reason, it would be good to have lots of people whose TMAU tests came back negative attend the meeting.



Dr Shephard will also be talking about a potential project. As always, nobody wants to make people hopeful, only to have them let down by a failed bid for funding, but the potential project involves an application for funding with the Halley Stewart Trust for a social project regarding tmau/metabolic body odour. http://www.sirhalleystewart.org.uk/what-we-do/what-we-fund/

www.sirhalleystewart.org.uk

The aim is to get the backing of this Trust to fund a social research project into the effects of living with TMAU. The Trust will fund a post for a research associate who will, professionally and ethically, conduct interviews (audio, via skype perhaps) with our community and carry out surveys. 20+ face to face interviews and 100+ written surveys are needed.

With this evidence of discrimination in the workplace and social inequality etc, the backing of Halley Stewart Trust, and support from UCL, Liz Shephard hopes to establish an All Party Parliamentary Group which can then effect change at government level regarding disability etc. Her UCL colleagues/advisors have said that our individual efforts to contact MPs will always have minimal impact and that backing from UCL and from a Trust like Halley Stewart will have more impact. Let's hope that once the government realise how much it costs to keep odour sufferers sick (via welfare benefits, counselling etc), they may then decide it's cheaper to cure us!!!

To read the previous update : click here

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Thursday, October 10, 2019

UK TMAU meeting with Prof Liz Shephard : London 19 Oct

MEBO UK organizer Karen James has this message about a London meeting for TMAU people :


St Mary's Hospital Meeting in London, UK
SATURDAY 19TH OCTOBER from 11am until 1pm.

Please keep this date free if you can be in London because some specialists, including Prof Elizabeth Shephard, and Dr Azara Janmohamed , have agreed to give up their Saturday morning to have a meeting with us at :

St Mary's Hospital
SMCA Clinical Lecture Theatre,
Level 2,
Cambridge Wing,
Praed Street,
London W2 1NY

It would be useful to have an idea of who is attending via email :
karen.james@meboresearch.org.

Everybody is welcome to come to the meeting.
Please call if you can't find us: 07505 590972
At 11am, however, I will turn the phone off.

Please note that no recording (audio or visual) is permitted. I will write a summary of main points for those who can't attend.

One focus of the meeting may be discussing the need for a more comprehensive, useful test. I hope that many odour sufferers will be able to attend this meeting as large numbers of us would demonstrate our commitment to moving things forward.


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Tuesday, October 8, 2019

uBiome Cease Operations and Liquidate - Chapter 7

uBiome website explorer.ubiome.com is still operational for the time being, however, anyone having a uBiome online account that contains test results is encouraged to copy whatever information you wish to keep before the site is taken down.


due to uBiome's inability to obtain funding to continue operations during the Chapter 11 process, they had no alternative but to shut down operations, file for Chapter 7, and to liquidate the company's assets.
After months of challenges and setbacks, the Silicon Valley company, uBiome is shutting down. On September 3, 2019, MEBO was informed by uBiome that the company filed for Chapter 11 Bankruptcy protection, and that this measure would not affect the MEBO research study, Clinical Trial, NCT03582826, Microbial Basis of Systemic Malodor and PATM Conditions, a research study funded by a uBiome research grant. However, due to uBiome's inability to obtain funding to continue operations during the Chapter 11 process, they had no but alternative to shut down operations, file for Chapter 7, and to liquidate the company's assets.

PRESS RELEASE BY UBIOME:

uBiome Converts Chapter 11 Case to Chapter 7 Petition;

Company to Cease Operations and Liquidate

San Francisco, October 1, 2019 – uBiome, Inc., today announced that it has requested that the Bankruptcy Court presiding over its pending Chapter 11 bankruptcy convert its case to a liquidation under Chapter 7 of the U.S. Bankruptcy Code. A hearing at which the Bankruptcy Court will consider uBiome’s request has not been scheduled.

The Company had been in discussions with its post-bankruptcy lenders and the statutory Official Committee of Unsecured Creditors in an attempt to secure access to its post-bankruptcy financing facility and settle disputes with the Committee, but was unable to reach agreements on these matters. Management and the independent directors of the Board of uBiome have determined that, without consensus among the Committee, the lenders and the Company, the conversion to a case under Chapter 7 is in the best interests of uBiome and its stakeholders.

If uBiome’s motion is approved by the Bankruptcy Court, the liquidation of uBiome’s business will be administered under the oversight of a Court-appointed trustee.

uBiome is advised in this matter by Young Conaway Stargatt & Taylor, LLP.

Anyone having a uBiome online account that contains test results is encouraged to copy whatever information you wish to keep before the site is taken down.
A few days later, MEBO received an email from the scientist who has been providing MEBO with support in the management of the research grant provided to MEBO by uBiome. In this email, she explains, "this was extremely unexpected and due to a disruption in the financing that was funding our ongoing operations during the bankruptcy process...I cannot express how sorry I am for the immense disruption to your projects that this causes."

MEBO'S POSITION ON THIS MATTER:


  1. MEBO regrets the turn of events that everyone involved, employees and clients, have had to endure with the final outcome of this development. We wish the uBiome employees who steadfastly dedicated their expertise on a daily basis to provide services to their clients, our gratitude for the fine service they offered MEBO. We wish each of them well in their future endeavors.
  2. MEBO is grateful for the research grant uBiome provided us, at no cost to MEBO. We are also grateful for all the data uBiome has provided on the samples MEBO participants provided.
  3. The Business Insider's above referenced article states, "insiders told Business Insider that the company's key science was flawed from the start, prompting the company to start an internal investigation.
    • It is unclear whether indeed there were scientific procedural mishaps or whether this is a case of disgruntled employees who lash out under these unfortunate circumstances. The investigation will shed more light on this matter moving forward.
    • These insiders questioned sample contamination issues. Whether or not this was indeed the case, it would not really affect the MEBO study results, as we are looking at common trends in aggregate data.
    • In addition, the primary focus of the conflict is primarily on the question of how accurately the uBiome SMART GUT test was diagnosing IBS and other gastrointestinal issues while uBiome was charging insurance companies for the test. Nonetheless, this was not an issue for concern in the MEBO study, since the tests performed for MEBO fall under the Explorer studies and were not with the aim of providing diagnosis, but rather to provide raw data about the gut microbiome that MEBO could use for the purposes of our research study.
  4. When seeing what other similar options available in the scientific world to examine gut microbiome, it is MEBO's opinion that other companies like American Gut and Viome are not necessarily doing a better job than uBiome was, in terms of the science. The problem is that uBiome is facing legal challenges, and at least so far, the others are not.





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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