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
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
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
(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
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
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.