Thursday, December 5, 2013

Whittemore Peterson Neuro-Autoimmune Institute

More News on the World wide front of Autoimmune Illnesses... and another "term" new to me "Neuro-Autoimmune?

I just got a "newsletter" from the Whittemore Peterson Institute. It contains a great deal of the research their doing in regard to FM/CFS/ME. Of course their beginnings are from the 2 doctors that actually discovered CFS/ME - and FM as a "real illness". Most know the story about the small town in Nevada, where suddenly many residents that were very healthy suddenly, with no explanation became so very ill that they were unable to work. This "mysterious illness/syndrome" whatever you want to call it, was bringing in patient after patient to this small clinic where the 2 physicians quickly became overloaded. Years have passed since the first "signs" of these illnesses began. We have been through all kinds of phases, as patients and I can say doctors also. NO one knew much about these. Doctors thought for the most part patients were (especially female patients) were "depressed" stressed, or plain hypochondriacs. Often with a recommendation I am sure that you need a "shrink". Also it was a "waste basket" diagnosis for awhile. Doctors saw patients with some symptoms of FM, CFS/ME thus if they could not really get a good understanding of what may be wrong with a patient, they had FM. And they left a doctor's office horrified. I know I did! I was told this MANY years ago, back when it was either put upon mainly women who exhibited many of the symptoms, and were "busy" wives, Mom's, employees, "chief, cook and bottle washer" of their lives. So "stress" and "depressed" was how we were treated. No really know "reason".. not a virus, not an infection, not a flu (even though symptoms can and are often "Flu" like)... and not a whole lot out in the realms of medicine to explain it. It really wasn't until about the last 5 to 7 years, I've seen a dramatic change in how patients with these illnesses are treated. First of all, you are taken "seriously". Now, FM/CFS/ME are REAL illnesses, so you have a REAL DIAGNOSIS, thus you expect  explanations of why, how, when, what, where and why?  

Why? You also expect to be told what the "treatments" are, and when will I "get over this"... "yuppie flu" (another horrid term used)??? A couple of years back the Whittemore Peterson Institute became very well known throughout the world. They seemed to be "the beginnings of those questions, and also possibly how to get better, treatments, and mainly what it is, how did I get it? They came out with a huge "clinical trial" per se... that showed great promise to those inflicted parties. It was based on "mice" and a "viral" type manifestation, and it spread like wild fire throughout all of the social media, twitter, in news articles... patients, doctors, everyone was talking about this "answer" to these illnesses. It was a bit of a while, but after the glory came disappointment. It was told that these "trials" had not be as exact as the should have been. There were many errors made during all of these that caused for the entire study to be trashed. This "retro" virus that all had hoped answered the call, turned out to be not trustworthy, incomplete, and just brought a downer to those in the middle of these illnesses. Since then, WPI, has been doing some incredible research by many very great people in the medical world, and the discoveries that they are now making DO SHOW GREAT PROMISE! As I was reading over the newsletter a little while ago (and is the POINT to this long post, is that NOW these illnesses are being "grouped" more as "neuro-immune" diseases. In fact the WPI now has their clinic speciality labeled as "Neuro-Immune" Diseases. As I read this, what I have said for a LONG TIME, and what brought it really to hit "home" of course "immune". I've been SAYING for YEARS, these illnesses are in the same scenario and are "autoimmune illnesses". They just have not proven it, but now, "Neuro-Immune surely says it all. I told my husband I WISH so VERY MUCH, I had went onto BECOME A RESEARCHER, in these realms. If I were not so chronically ill, and taken over with brain fog, plus was still around 40 years old... I WOULD GO BACK TO COLLEGE AND GO INTO CLINICAL RESEARCH FOR THESE AUTOIMMUNE illnesses/diseases/syndromes.. it almost breaks my heart, that I long so much to be able to "find a reason, find ways to stop these, and a ways to treat those already with all of them. And I am speaking of All Autoimmune Arthritic and Autoimmune illnesses in general. Life hands us what we are so often not able to reason with... and I don't know "why" I did not more fulfill my college and so on when I was younger... plans change, you "fall" more like "trip" into love... and you let YEARS slip BY... you are 50 +, and chronically ill... thus your "research" is what I and all of you do... advocacy!!! I guess this post is for everyone... ill, not ill, young, elderly, college, high school, wherever you are, whatever you are doing, whatever your dreams maybe.... don't WAIT until all the YEARS PASS you BY... and then like myself, have to live with some regret, that what I almost feel I was "meant" to do, slipped through my fingers, like sands through a sieve. by the way I think I can attach their newsletter....I have their newsletter in a PDF... I'll try to put it on here and then let you now.... in the meantime here is their website

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