Tuesday, May 18, 2010

18th Anniversary of Awareness Day

  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

  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, ME,
  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

  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 ME. 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 ME. 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

  When most of them are ignorant about CIND
  (Chronic Immunological and Neurological Disorders)
  such as ME., 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

  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 ME 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

  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 www.rescindinc.org
  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.
  Creator of may 12th International Awareness
  Day for CIND.
  [email protected]

No comments: