The 18th anniversary of May 12th -CIND

[Guest guest]

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 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 and , and 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

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 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

recommend.

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

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

. 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

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/ 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 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.

Sincerely,

Tom Hennessy, jr.

Founder

RESCIND, Inc.

Creator of may 12th International Awareness

Day for CIND.

RESCINDINC@...