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Saturday, August 18, 2012

Sufferers ask, "How can I help?"

TMAU/FMO3 WEBINAR, 19th AUG, 1pm UK/6pm EST
Click here to go to Eurordis - rareconect.org webinar room for TMAU/FMO3 webinars
Note : Use a nickname if concerned about name being shown. Webinars will be recorded.


Many sufferers frequently ask me, “How can I help?” and unfortunately, I don’t always know the answer to this question. If only we had a brainstorming session in which we can bounce ideas off each other, that would be the best way the whole community can help... Well, Robert Pleticha, Online Patient Communities Manager at EURORDIS and part of the RareConnect Communication team, is providing us with the platform for this brainstorming session! This is the opportunity to help! On the 19th of August, at 1pm/EST UK/6pm, click here to go to Eurordis - rareconect.org webinar room for TMAU/FMO3 webinars.

This webinar a project by RareConnect, a partnership of NORD and EURORDIS, and RareConnect invites all patient groups from around the world to participate. Please announce it in your respective patient group forums for all to come.
Note : Use a nickname if concerned about name being shown. Webinars will be recorded.

This webinar a project by RareConnect, a partnership of NORD and EURORDIS, and RareConnect invites all patient groups from around the world to participate. Please announce it in your respective patient group forums for all to come. See post, Please join the webinar sponsored by RareConnect, a EURORDIS & NORD Partnership, and be a part of this opportunity to gather information and to present your questions and opinions on how we can best find solutions to raising awareness and to promote research, to find the proper treatment and cure.


SPEAKING FROM PERSONAL EXPERIENCE: MEBO Research’s first attempt in doing a webinar was at the MEBO Nashville meetup in 2010, and although we were “novices” in the technical aspect of conducting a webinar, we were still able acquire a wealth of information about microbes in the human body from MEBO’s Scientific Director, Dr. Irene Gabashvili, Founder of Aurametrix. Below is the Presentation Transcript and the slideshow of the “Microbes and Us” webinar for an in-depth presentation and discussion with many questions asked by sufferers pertaining to the role of microbes in multiple types of body odor conditions and their management. As you can see, much can be obtained from webinars.

  1. The ‘Microbe and Us’ webinar is very informative and particularly interesting as it identifies the normal bacterial flora of humans and where bacteria lives in our bodies, explains the types of microbes including intestinal microbiota responsible for IBS-C, IBS-D, IBD, Crohn’s disease, as well conditions that may be linked to microbiota, such as halitosis, hyperhidrosis, multiple chemical sensitivities, food intolerances (IBS, Celiac, TMAU, CFS), and more.

  2. Dr. Irene Gabashvili, Founder of Aurametrix, Personal Health Management Systems, presents an in-depth discussion of microbes including Pathogenic Bacteria DatabaseAlphabetical List of Pathogenic Bacteria’, which has one of the most complete database of the species.
  3. In this slideshow presentation, there is a section entitled ‘Diet Tidbits’ which addresses the most widely promoted prebiotics that have been suggested to increase the number of bifidobacteria and discusses the benefits of probiotics.
  4. This section also touches upon a very restrictive diet promoted as a way of reducing IBS symptoms, Crohn’s disease, Ulcerative Colitis and autism.
The final section includes the answers to the following webinar audience’s questions:
  • Why do people have Bacterial Overgrowth?
  • Do bacterial populations in human body depend on genetics, environment?
  • What kind of bacteria are TMA-producing?
  • I heard that Solobacteria causes halitosis. Is it really so? (includes a list of ‘Halitosis-related bacteria’)
  • What bacteria smell?
  • Is heterogeneity of metabolic body odor sufferers hindering research?
  • The collection of microbes for study must be a problem. Cross-contamination, etc.
  • How do you get them?
  • What is the most effective treatment to eliminate the desired bacteria: food or antibiotics?
  • How often can we take antibiotics without causing harm?
  • How does stress affect bacteria and enzyme deficiencies / pathways?
  • How does stress affect intestinal permeability?
  • Could a probiotic cleanse (sold on the market) help to flush us help to populate good bacteria?
  • For many of us the diet is confusing would it be difficult to customize a diet for us?
  • How long will it take to see diet results?
  • What would be the ideal diet..Are proteins beneficial?
  • Why some IBS patients have no odor while others do?
  • Can FMO3 be genetically engineered into a probiotic?
We thank Dr. Irene Gabashvili, Rob Pleticha, and all participants of these webinars for the tremendous contribution to the plight of all sufferers to find answers. Hope to see as many visitors as possible in this first event.
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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