Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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It's International CFIDS/ME/FIBRO Awareness Day!

Discussion in 'Action Alerts and Advocacy' started by cfs info, Mar 1, 2010.

  1. _Kim_

    _Kim_ Guest

  2. creekfeet

    creekfeet Sockfeet

    Eastern High Sierra
    WPI Awareness Day flyer

    Here's the WPI's flyer for our day, which we can share.

    Flyer PDF
  3. creekfeet

    creekfeet Sockfeet

    Eastern High Sierra
    Don't forget to rock some socks. I'm wiped out but I think I'll get out my pastels later and make a little sketch of my idea for my sock. One step closer to actually creating it.
  4. spindrift

    spindrift Plays With Voodoo Dollies

    Wow Q & A with Dr. Judy Mikovits and Dr. David Bell. How cool is that! I just love Dr. Bell and Judy of course too.
  5. leelaplay

    leelaplay member

    a message from the founder of May 12 awareness day

    Thomas Hennessy jr. to CO-CURE May 12 (3 days ago)

    [sb/if: I just found this. I am still so ignorant about the history of this disease. I had never heard of Thomas Hennessy before.]

    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.
  6. JT1024

    JT1024 Senior Member

    All I can say is WOW..... Not much brain function here but so many years after the establishment of "Awareness Day".... so little and yet so much has happened.

    Personally, I was always so independent out of necessity that it is very hard to ask for any kind of help. Those close to me want to continue to believe that I am the same person I was before.

    I am paying close attention to closing remarks... "remember to take care of Numero Uno!". Not easy to do when you were taught to put everyone else before yourself.
  7. cfs info

    cfs info

    May 12, 2011 - Awareness Day

    This is the 19th year of International Awareness Day. What have people planned to raise awareness?

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