‘The More You Know the More You’ll Want to Give’: the first Enteroviral Foundation Opens

March 31, 2009

Posted by Cort Johnson

lisafaustI first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had had harrowing but slow recoveries – nobody was close to healthy. Most counted themselves very lucky to be able to get to the conference at all. There were Montoya patients on Valtrex, Chia patients on interferon, other patients on Lyme treatments.

Lisa had really been through the wringer. The managing partner of Contemporary Events Group – an event management firm – she was traveling on business when she became ill.  Within months what doctors first thought was strep throat had hit her gastrointestinal and reproductive systems. Then it attacked her heart, liver, gall bladder and pancreas. Then she had trouble breathing, her adrenals gave out and she developed cognitive problems. She ended up losing her gallbladder. This once very healthy active businesswoman had in a period of months become completely disabled.

After a coworker landed in the hospital with a similar illness and she saw her daughter and many of her daughter’s classmates became ill it seemed clear to her, at least, that some bug was making it’s way through the community.

Hitting up all the experts, however, provided little help. Four weeks at Mayo (one doctor said ‘stress’) and more time at Emory, New York and Boston had left her with nothing but a huge bill. She finally got relief after the HHV6 Foundation hooked her up with Dr. Chia and other doctors. Their cutting edge diagnostic tests finally gave her an answer: coxsackie b4 virus infection. With the proper treatments she slowly got better.

Lisa had gotten help through the HHV-6 Foundation but she didn’t have HHV-6  she had an enterovirus. What she learned about enteroviruses shocked her; 50 million people in the US get enteroviral infections every year. Most pass them off without problem but some come down with difficult to diagnose even life threatening illness. Enteroviral infections have been linked to many difficult to treat diseases such as myocarditis, encephalomyelitis, encephalitis, polio, hand foot and mouth disease, chronic fatigue syndrome (ME/CFS) and others.

But enteroviral infections can be brutally difficult to diagnose. Since they often infect one organ (Lisa’s throat) and then spread havoc as they make their way to other organs (her heart, liver, gallbladder, etc) they can be hard to track down. Not surprisingly as one organ system after another is hit doctor’s are often baffled by the changing array of symptoms they see (hence the stress diagnosis from Mayo). Once they get the idea to start looking for enteroviruses the virus, unfortunately, has very likely moved out of the bloodstream and deep into the patient’s tissues. The only way to find it at that point is to start biopsying the organs. That was how Lisa finally got her answer.

Lisa Faust had the resources and persistence to keeping knocking on doctor’s doors until she finally knocked on the right door – the HHV6 Foundation – and got the right advice. But most people with severe enteroviral infections will not get diagnosed and will not get treated. This, Lisa thought, had to change. But there was no Enteroviral Foundation to provide puzzled patients and physicians accurate information.  There was no central resource for the researchers battling this multi-form illness to come together. Somehow amongst all the Foundations in the medical world they had missed this one.

lisafaustdaughterSo Lisa Faust, businesswoman, somewhat recovered patient and after her daughter became ill,  determined mother, decided to create the first foundation devoted to the study and treatment of enteroviral viruses. It’s called, appropriately enough, the Enteroviral Foundation.

She’s worked fast. Last year at the Symposium on Viruses she mentioned she wanted to start a Foundation. Since then she’s contacted enteroviral researchers across the spectrum, including the Center’s For Disease Control, and has found interest to be high. She’s gathered a stellar board of directors including several Ph.D’s, an M.D. (Dr. John Chia), the President of a Scientific Consulting Company, a marketing director and herself. The Foundation’s website opened up last month and the grand opening celebration is just days away.

The website has spectacular graphics but it’s goals are even more eye-opening; an international conference every year, grants to support early diagnostic techniques and better antiviral treatments, an exchange center for researchers, doctors and patients and, of course, the all important goal of raising public awareness.

The Foundation’s grand opening event is April 4th. No event manager would open her own Foundation without a splash and this event, held at one on of Atlanta’s most exclusive night clubs (Opera), promises to be memorable one with artist Marco Bosco and others performing.  If you’re in town check it out and please support the Foundation.

Check out the Enterovirus Foundation here and get tickets to the event here. “The more you know, the more you’ll want to give”.

7 comments

{ 7 comments… read them below or add one }

Cinda Crawford March 31, 2009 at 3:39 pm

Congratulations on your new foundation, website & coming out party in a few days. It is important for people to realize that there is more than one way to exhibit and overcome chronic illness health problems, including enterovirus infections. In my work, I’ve found evidence of enteroviruses in the body. If left unchecked, the ‘patient’ becomes very sick and can experience ill health for a long, long time. If addressed with some types of holistic, healing methodologies, people’s immune systems (once again) can recognize the enterovirus as a foreign invader and set about getting rid of it! I invite you to check out the Health Matters Show and leave your questions and comments about Chronic Fatigue Syndrome and Fibromyalgia there, plus be sure to listen to the live podcasts. People everywhere want to get well and whether it’s through alternative methodologies or traditional western medicine, they deserve the information and the tools to get healthy! Thanks for what you do, Cinda Crawford, host of the Health Matters Show

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cort March 31, 2009 at 6:04 pm

Hi Cinda in my experience ‘energy healing’, meditation, mindfulness therapy, etc. can all be helpful in this illness. Anything that reduces the stress response and induces the ‘rest and digest’ response is helpful – and why wouldn’t it be since both of these impact the immune system.

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Margaret Diann April 1, 2009 at 10:53 am

What is often thought to be a virus is actually a particular chemical poisoning. Suspect 2-butoxyethanol or glycol butyl ethers for cause of CFIDS, CFS, FM. Find the anemia this chemical causes (also causes multiple assortment of autoimmune issues) and you will want to avoid it; especially in our home cleaning products (non disclosed, however)

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emucciste April 3, 2009 at 8:18 pm

Great site this aboutmecfs.org and I am really pleased to see you have what I am actually looking for here and this this post is exactly what I am interested in. I shall be pleased to become a regular visitor :)

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cort April 5, 2009 at 2:52 pm

Thanks! I hope the information is helpful and I especially hope that Lisa Faust and others like her can raise enough money to get this disease (or diseases) investigated in the depth that they deserve. If you’re not subscribed to the newsletter please subscribe. The next few issues are going to focus on the big international (IACFS/ME) Conference.

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Lisa Ross Faust April 9, 2009 at 7:23 am

We have received so many messages thanking us for taking EV on … it is truly a huge project and the kick-off event really made an impact. Without sharing too much, we are working to launch an awareness campaign this fall….much to do to get there. On our website under News you can see a new study released in the UK that clearly links EV to diabetes …and if we can further investigate other tissue and organ involvment I think we are going to find EV is involved in a lot of diseases … including a trigger for CFS/ME. cort thank you for sharing the news!!

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cort April 16, 2009 at 1:26 pm

Thanks Lisa, After Dr Chia’s findings so many people with ME/CFS are interested, and of course, concerned about enteroviruses. We’re in debt to you not only for taking this big job but for doing it so well! (I’m so jealous about your design). Good luck with everything.

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