WPI/XMRV in the Legal Spotlight Now

XMRV has raised eyebrows and created controversy since it was announced on ABC News shows, then to the rest of the mainstream media, in the fall of 2009. I covered it back then, as well as a very suspicious Dr. Oz show with Dr Teitelbaum, here at Lumigrate.  I poked around, calling someone I'd met in the past whose family owns a similar sort of research company to ask their opinion.  I even tracked down my old Ear Nose and Throat Specialist who in 1989 had told me they thought CFS was possibly caused by a retrovirus -- where did THAT information 'go' and why is it that 20 years later, there's another similar claim?  The release of information was filled with cues about furthering research with money, and there was a test kit people could purchase to test themselves available, though not one insurances pay for; message was included to pressure the powers at be about THAT as well.  

I've been very much following the subject of CFS and FMS since my onset/diagnosis of CFS in 1989; back then it was called CEBV (Chronic Epstein Barr Virus) because 'they' had thought the fatigue was caused by EBVirus reactivating, then 'they' realized that was a side effect and since 90% of the world's population had EBV in their blood if tested they'd better find a more accurate name.  What had made me raise an eyebrow about Dr Oz's program with Dr Teitelbaum, who I think overall is an awesome leader about this topic but had some suspicious things over the years about the money made by the products he promoted, was that they called it 'chronic exhaustion' throughout the program, only saying 'fatigue' in the symptoms.  Finally, Dr Oz had a piece in O Magazine about it and then she finished out her show as she was transitioning and forming her OWN network, and I realized they were laying the groundwork to profit from the publicity they will obtain when they do.  At least that is my prediction.  We'll see if I'm correct or not about that one. 

What REALLY made me suspicious is they didn't 'use the F word', as I coined the phrase for fibromyalgia, AT ALL.  There'd been this '600 pound elephant in the room' thing going on for a LONG TIME in my mind, as to WHY Oprah, Dr Phil, Dr Oz weren't having shows about fibromyalgia when it affects about a fifth of the women in the United States (though many don't know their symptoms are part of fibromyalgia and they're at risk for developing the full condition if they don't intervene and make changes in their life).  

So I was JUST as suspicious and my radar and 'bull#$% detector' went up just as much around that time when I heard about XMRV.  Someone was behind things for a long time laying the groundwork to profit from something by taking the public thinking in a certain direction.  Hmmmm, is this why Oprah and all related to her (Oz, Phil) were so quiet?  Was there a 'conspiracy', to use that term?  My father, who is no longer living, had said that when he worked in a major corporation where price fixing was illegal, they had sheets which showed what all the competitors were going to charge for future products so they could all fix their prices.  So I grew up knowing that corporations don't follow laws.  We've all seen that the medical industry in many cases has ventured far from following moral laws and ethics.  And, while I worked as the administrative liaison for a notorious air quality research team, it is not much like medical research.  

The BEST THING about these times we are in is the power of the Internet.  I don't have to be the only person I know of who is saying 'is this something that makes YOU go 'hmmm'?'.  

Please remember, I ask of people that they 1) Gather and explore facts 2) communicate with others to help refine your position and define your opinion and then 3) tell others about the facts AND your opinion on them, but most of all be sure to be clear what is fact and what is opinion.  Otherwise it ends up like that childhood game where we start with one sentence and whisper it to each other in 'telephone' and it ends up at the end something quite different.   See, everything we really needed to know we DID learn in kindergarden!  

retractionwatch.wordpress.com/2011/11/19/chronic-fatigue-syndrome-researcher-judy-mikovits-arrested/ [1]

Chicago Tribute/Health covered it too, a few days later.  I found the pieces at this link VERY helpful.  www.chicagotribune.com/health/ct-nw-chronic-fatigue-scientist-arrest-20111122,0,5455739.story [2] 

As did MedPage: www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/29945 [3]

Comments

Sat, 11/19/2011 - 12:07pm

#1 [5]

Mardy Ross

Title: LumiGRATE Poster - Top of the Totem Pole

Joined: Feb 16 2009

Posts: 2032

WWYD -- What Would YOU Do?

I thought I'd ask a follow up question.  In general, what do you think is going on, if you know enough about this situation to add a comment.  

But moreso ... and to make it simpler for those who haven't studied this issue, why do you think the fired employee is doing what she is doing?  And what would YOU do if you were in the job she had? 

This is an exercise given in higher education classes about ethics and rules.  Imagine you are a medical researcher and you have access to a product that there is only ONE dose of, that is needed to study and replicate to solve a condition that many children have and it's devastating to them and their families and communities.  AND you have a child who is born and has that condition.  Would you steal the one dose so your child would live, or would you let the process unfold, which takes about a generation to get something figured out, manufactured, tested, and made available, with your child, in the process, dying.  

Imagine what information this researcher who was fired might have.  Information that could be leading to the truth about this industry and this particular company.  Is she possibly sacrificing herself for the good of us all?  

I've done it before -- different situation since I'm an occupational therapist, but 7 years ago right about now I was fired for not doing my paperwork on a Friday evening and instead helping the nursing team out with a patient that very well could have badly injured a brand new lower back surgery, potentially becoming a paraplegic even.  Another patient had died over a weekend when I didn't push the nurse on a Friday to let me work with a patient on a dangerous wheelchair I'd just gotten orders on that day; the death was a result of the wheelchair and staff not being careful and following procedures, something that I could have addressed if I could have started the patient that Friday.  But I was told to do it on Monday; she was dead by Monday.

I've not had health insurance paid for by a company since, because I realized I couldn't keep working for companies in the industry that would do that to people.  I formed my own company at that time, and contracted in an outpatient clinic for a few years and realized the need for the public to be educated about MANY aspects of the medical system. I worked on call doing home health for a company, getting my numbers and the overall numbers to allow them to create a part time position for me so I could get insurance benefits AND be guaranteed a base of money each month. Then they had a management change and the whole plan changed and once again, I was left out of the plan.    

So here I am.  Here you are.  Please support Lumigrate by telling people about it, that helps educate them and brings more people to Lumigrate, which allows me to get increasingly reputable and busy experts to provide information for YOU, the consumers/customers/patients/clients to learn from.  Learn the TRUTH from.  Or as close to it as we can get.  And mostly so we can help as many people get as well as possible, or stay that way! 

~~ Mardy

 

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [4] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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