Discussion in 'Fibromyalgia Main Forum' started by cerise, May 12, 2010.

  1. cerise

    cerise New Member

    Greetings Boys and Girls, Ladies and Germs,

    Today is the 18th anniversary of May 12th, International Awareness day for CIND (Chronic Immunological and Neurological Diseases) We included
    ME/CFS, GWS, FMS, and MCSS that first year. Over the years we have added other CIND disorders as they became known including tick borne illnesses such as Lyme Disease, Bartonella,Babesia, and other viruses, bacteria, microbes, chemical insults, and other toxins as they are discovered like XMRV. The most important words in this note are the following two: THANK YOU!!!

    Thank YOU to one and all who crawled out of bed to help in any way for us to get to an 18th anniversary! A special thanks to Roger Burns for keeping us online for the first decade, and Jerome Greyson for keeping us online for the second decade. And to my parents, my friend's Michael and Patrick, and Robert who helped pay rent, and all those who fed me over the past 25 years. Thanks to anyone who wrote or called their local, regional, or national politicians. Thank you also to any spouse, sibling, neighbor, or friend who helped to care for those of us who are too sick to care for themselves. It might sound odd, but hand written, personal notes to our politicians, newsmakers, and editorial boards of newspapers are sometimes the most effective help you can give us.

    As most of you know, since the medical experts have not been able to isolate a single virus, bacteria, or chemical insult that triggers our descent into this "Living Hell", most of us with diagnoses of FMS, M.E, CFS, GWS, and MCSS, which i called Chronic Immunological and Neurological Disorders (CIND) back in 1991 have to rely on lists of symptoms to get diagnosed. For all you newbies out there, make SURE you keep good records of these lists. And take those lists to the various doctors you will see before you get a proper diagnosis. Then still keep those lists of symptoms and tests taken in a big box, because you will need them to help win a disability case. Sadly, at least in the USA, 90% of people who become disabled, are rejected the first time they apply for permanent disability. About 75% are rejected on the second application. And even when you go before a judge, (called the Administrative Law Judge or ALJ) you only have a 50/50 chance of winning disability. If some of you are healthy, Please google Ms. Lennie Copeland. She was the brains behind "Living Hell", the best documentary yet produced about people with M.E. and CFS. She lived in the bay area of San Francisco, the last i heard. Her brother played drums in a little band by the name of the "the Police". a copy of that should be put up on You tube!

    Because i am personally so ill, i have not been able to get it together to write up lists of things that have worked over the years..It really is stunning to hear so called "experts" of the Weaselly school describing various and sundry "somatic" symptoms that allegedly have no known medical cause. He has done the same with the so called "Gulf War Syndrome" (now called Gulf War Illnesses). In reality,it is the incompetence of the medical establishment and NOT our fertile imaginations that are keeping us sick. I have read more than 21,000 emails, letters, notes, treatises, medical articles, and internet postings, and probably met more than 1,000 "sufferers" of these various disorders at medical conference across the USA and at government meetings over the past 25 years, and to be honest, their stories, with very few exceptioms, or outliers, don't vary by more than 10%,.. 15% at the most. I believe that the great Dr. Melvin Ramsey wrote the best sentence ever to describe the misery of M.E. when He said,

    "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical efforts after its onset: put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis".

    (of Course, this is exactly the opposite of what actually happens in the U.S. and what our overworked, overwhelmed, and undertrained Doctors recommend. When most of them are ignorant about CIND (Chronic Immunological and Neurological Disorders) such as M.E., CFS, MCSS, FMS, GWS, and Tick borne illnesses like Lyme, Babesia, Bartonella, Brucellosis, Giardia, EBV, HHV6, XMRV, etc.) I can assure you that C.B.T. (Cognitive Behavioural Therapy) and G.E.T. (Graded Exercise Therapy) might help some people, some of the time, but they are NOT the answers to the vast majority of people who have been SO ill, that they are homebound or bedbound for six consecutive Months or more. 25 years ago, we were listed as having the "Yuppie Flu" because many of us were hard charging types who spent our life savings trying to find something, anything that could be so vicious, that it could completely ruin our lives.

    If you had most ANY other serious illness and waited until you were bedbound for six months, i could diagnose you in 4 simple letters. D.E.A.D! It is incomprehensible to me, that the medical establishments of the world would accept for more than 2 decades, such stunningly incompetent work product as the so-called Holmes -1988, Fukuda 1994, and Willy Wonka Reeves -2005 'definitions' of something that doesn't really exist. the mysterious
    "Chronic fatigue syndrome". back on April 15, 1989, I gave my first public speech about "CFS". I said that Webster's dictionary says that to "define is to make clear and distinct, to differentiate". Then they proceed to list a bunch of symptoms that any ill person could have. If you want to look at a definition for the alleged "CFS", look at the Canadian Consensus Definition from Carruthers, et al. And if you want to find an accurate definition of Myalgic Encephalomyelitis, then google Byron Hyde,MD, of the Nightingale Foundation. It was Byron who told me about Florence Nightingale. When i researched the history of our little Ms. Flo, she sounded like MANY of the nurses i have met with M.E. over the years. When i found out that her birthday was in the springtime in the northern hemisphere, and early autumn in the southern hemisphere, I said, "We have found our day". Since i was already considered a "burr under the saddle" of the medical establishment, i used the words "May 12th was chosen" and i kept my name OUT of it.

    However, Today is May 12th!
    To all who are still on the right side of the grass, I say Congratulations!
    Send a friend to the library and ask the librarian to order a copy of "Osler's Web"
    by the great Hillary Johnson. She has a new, and updated edition out. then Read it!
    This book details the struggle of so many of us over the past 25 years.
    The original editor of this book also edited "And the Band Played On" By Randy Shilts,
    a famous AIDS activist back in the 1980's. He said, "I never thought i would say this,
    but you people (meaning CFS patients) were treated worse than WE were!" (meaning AIDS patients,
    who were spat upon, denied medical treatment, thrown out of their homes, denied fair insurance settlements and more)UNTIL, some brilliant researchers isolated HIV, a retrovirus, that crippled, but did not kill it's victims.
    However, HIV weakened the host soo much that, other opportunistic infections killed the patient.

    With M.E. and related disorders, we are often worse off. Even with the discovery of XMRV, I personally do not
    believe that any one virus, bacteria or toxin is causing all of this misery. the famed virus hunter, Louis Pasteur
    once said, "The antigen is Nothing. The Terrain is everything!" I think we are all stuck in a case of "different insult, same result". this is BAD news for insurance companies. If they were forced to pay fair settlements to all of us who are too sick to work, but just not quite sick enough to die, they would go bankrupt. Most of these big, multinational Insurance companies have gambled their clients' premiums for the past decade on esoteric financial instruments called CDO's. These Financial "instruments of mass destruction" as Warren Buffett calls them have wiped out the profits of the big insurance companies. They even wiped out the equity of AIG, one of the largest Insurance companies ever created. And Places like UNUM/Provident Insurance do not have the funds to pay fair disability claims for us. So, they try to obfuscate the truth, and delay and deny paying just claims. They are aided and abetted by incompetent and underfunded wags at the CDC and NIH. and We pay the price.

    Things are changing however. The Whittemore/Peterson Institute has ruffled the feathers of many in the medical establishment by teaming up with the renowned Cleveland Clinic, and some top virologists and researchers in the country. I do know know if XMRV is a cause, or the cause of all this misery, or a simple bystander. But it has woken up the sleeping giant.

    As i said back in 1989, at the end of my speech in SF, CA. "The late Sam Rayburn, chair of the Senate Subcommittee investigating the crimes of Watergate, -Any damn jackass, can kick a barn down, but it takes some damn fine carpenters to build one!' I think it is high time that we stop allowing these jackasses from kicking our individual barns down. We need to continue to unite, at least one day per year, and work in unison with people like the WPI, and the upcoming NEI Institute in New Jersey, spearheaded by my friend Marly Silverman, founder of P.A.N.D.O.R.A., and all the doctors and researchers who believe that we are SICK and not tired. These people know that we ARE tired of being SICK! We need to ask these carpenters to help rebuild our lives.

    So, Please go to our website at and then scroll down to the M.E. Petition. We have more than 8700 names on our petition. PLEASE write a few sentences on the petition when you sign it. Ask your friends and family to sign it as well. We need to pass the 10,000 signatures mark. Then we can ask some healthier people to take the petition to Congress, to the CFSCC, to the medical establishments of the world. Then Please download Susan Wenger's excellent and prescient song about M.E. and please donate some funds via paypal, so we can keep going for another 18 years!
    Thank YOU ALL for your help over the years. This day was and is completely patient driven.
    So keep up the great work!
    but remember to take care of Numero Uno!

    Remember that the great philosopher Edwin Schopenhauer once said, " All truth goes through three stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident.

    Ciao for now.

    Tom Hennessy, jr.
    RESCIND, Inc.
    Creator of may 12th International Awareness Day for CIND.

  2. AuntTammie

    AuntTammie New Member

    thanks for posting and thanks to Tom for all he has done to help us

    any news about how he is doing since his accident and everything?
  3. cerise

    cerise New Member

    Tom is still in a nursing home in Florida, in a lot of pain on the slow road to recovery. He just got an estimate for his dental work he needs done for $6,200 which he does not have. He misses his family greatly & would love to hear from them. He's taking it day by day & looking forward to hopefully being able to manage life outside of a nursing home. Check out Tom's website at
  4. skeptik2

    skeptik2 Member


    May 2013 is being planned very soon. These comments by Tom are still mostly relevant (excepting the XMRV status), and much is being done now by researchers that may hold answers for us soon.

    Please note that rescind dot org is not operating right now, as there is no money to keep it going. Joni Comstock on facebook is now head of the may 12th efforts there, so if you are on that site, please go to her page and join the efforts.

    I hope mentioning this social networking site is ok here; I don't want to be in violation of any rules.