A Brief History of the Name Change Movement!

For the past six months, We have enlisted GOOGLE alerts
to forward to us articles about MCSS, FMS, GWS, ME and CFS.
we will added Lyme disease to the mix.

Sadly, most of these articles back up what some of us were saying
almost 20 years ago!

As you might know, a small group of us (about a dozen people)
started May 12th back in 1992. My Dad was a lobbyist for oilman
J. Paul Getty and I tried to convince Marc Iverson and others
to start a lobby day back in 1988, just months after I collapsed
after eating tainted raw oysters at a restaurant.

It took 4 years to start lobby day on May 12th, and of course,
since many of us relapsed so badly trying to organize the first May 12th
and lobby days, the CAA took over and have claimed credit for
something they fought against initially.

So what else is new?

Also, I said at the VERY first International CFS meeting
on April 15, 1989, that "if you 600 doctors in attendance
today, do NOTHING else, then get a correct definition and
"change the the damn name".

I said that Webster's dictionary says "to define is to make
something clear and distinct to differentiate".

I said that there was NOTHING clear and distinct about
waiting for someone to become SO ill, that they were
50% or more housebound and bedbound for six consecutive
months! with NO other illness.

100% of the people I knew with ME/CFS have more than one
diagnosis.

100%!  this was MADNESS!

I said that the host of this conference should even lock
the doors of the hall and NOT let the attendees out of the
room until they agreed to drop the "F" word... (we had just
had a 45 minute delay in the conference because of a fire
alarm, so saying that LOCKING the doors was what they needed
to do was a scary thought indeed!)

It was the end of the day, and most attendees were tired...
but they started cheering and hooping and hollering when I
said "we need to change the name TODAY!"

Of course, the powers that be did no such thing.

In the past 20 years, RESCIND, Inc. and many others have
followed us. We sold hundred's of coffee cups at medical
conferences that said "Help us Stop the pain, end the shame,
change the name, and get back in the game of life!"

We sold hundreds of t-shirts with the same message. We printed
almost 1,000 buttons with the international symbol of a red
circle with red line across the word CFS.

We spoke at most conferences. We posted a petition online
demanding the recognition of Myalgic Encephalomyelitis with
more than 8,000 signatures. It can be found at a link from
our main site here.

All of the sudden, in 2007,  Rich Carson of the Pro-Health CFS buyers
club decides he has a novel idea, that no one has thought of
before..... a "change the name movement". Many of us have been pushing
for that for 2
Decades!

We also pushed dr. Phil Lee, the number two man at the US department
of Health and Human services to "change the name" of CFS back
in 1994. He demanded a new group be found to accomplish this
task.

The newly designated head of the CAA, Ms. Kim Kenney was
appointed to contact the top 175 interested parties or
groups regarding the name change.

Of course, the founder of the "change the name" movement,
Me, was not invited. Neither was Roger Burns who had done
online polling showing the almost universal disgust the name
"CFS". Neither was anyone from the Medical professionals with
ME/CFS. So, it was a sham from the start.

But, we still persisted behind the scenes. And we Pounded on
Lenny Jason enough that he accepted the RESCIND plan to divide
these illnesses into at least 4 subgroups. Some of us wanted a group
for MCSS, one for FMS or pain centered, one for virally
induced (like ME-itis), and one for multiple triggers (like
Gulf war Illness). Lenny took our concern to heart  and his group
tried "neuroendocrineimmune disorders" with 4 subsets.

Dr. David Bell, who had even written a book called "the disease of a
thousand names" was chair of the committee when the name change report
came up. Dr. Reeves and company at the CDC refused to even have a
public discussion of the name change... after three years of work by a
group appointed by their very own CFS government committee!

This is a crime against humanity. It is ALL about the money.
Big corporations rule the world.

The politicians are well meaning civil servants in their minds, but
they are mostly tools for special interest groups in reality.

Massive, Multinational insurance companies like UNUM, which
once was a very honorable company, have become large criminal
organizations that should be prosecuted to the full extent
of the law as the criminals they have become.

Millions of people worldwide are sick with ME. Many of those
of us with ME are homebound, and even bedbound. I have been
bedridden 23 hours a day for 20 years.


The FACT is that Myalgic Encephalomyelitis is one of the
most serious illnesses on the face of the planet.

The FACT is that we have been lied to, mistreated, and
abused by the very people who are paid to protect us.

The FACT is that CFS (which is NOT ME) is the third lowest
funded illness at the US National Institutes of Health.

The FACT is that the Centers for Disease Control should be held
criminally liable for deliberately making a faulty definition
in 1988 without any REAL ME experts on the panel. Virtually
NONE of the original members of the Holmes Criteria group
had EVER treated a patient in a clinical setting.


The FACT is that US based physicians have failed their
patients and their medical oaths to "First do no Harm!"
by allowing this atrocious CFS definition to be adopted in
1988, and then they compounded their errors in 1994, when
they made a bad definition worse.

Now, in 2007, they have pollluted the patient cohort
further to claim that up to 2.5% of the US population has
"CFS".

The FACT is that in my original speech to those 600 doctors
at the First CFS conference in April of 1989, I presented a
poster with a picture of an iceberg floating just under the
surface of the ocean. On my poster I showed the CDC estimate
of "4 to 10 people per 100,000" as the TIP of the iceberg.
I claimed that there were at least 3 levels of ME/CFS.

I said that level 1 was "people who were homebound or
bedbound. My estimate at least 250,000 Americans".

I said that Level 2 was "People who could only work or
attend school on a part time basis. they needed help with
shopping, cleaning, and daily activities. My estimate
500,000 people.

And I said that Level 3 was "people who were One chemical,
viral, or bacterial insult away from complete and crushing
disability.

My estimate 5 to 6 million Americans. This was in 1989!

I said that the go-go 1980's and the introduction of more
than 50,000 various chemicals introduced in this century,
the massive increase of vaccines which were NOT often tested
in combinations.

I believed that a negative synergistic paradigm was going
to change medicine from chasing ONE mysterious virus (a la
HIV, this was 1989) to looking for ANY insult against a damaged
or predisposed host.

I quoted Louis Pasteur who said more than 100 years ago,
"The antigen is nothing, the terrain is everything!" I think
Pasteur was right!

It is a FACT that I took a LOT of heat for saying that I
thought these conditions were a case of "different insult,
same result".

I presented a poster of a train on a track. I said that the
immune system was one rail of the track and that the Central
nervous system was the second and parallel track. I said that
the railroad ties were Genetic predisposition, psychological
predisposition, vaccine exposure, viral exposure, various
infections, chronic stress, poor diet, unrestorative sleep,
accidents, chemical poisoning, food poisoning, other toxins.

I said that the train can run along rickety or rotted tracks
for a period of time, but if you put a bad batch of fuel in
the train, the engine could misfire and then the train would
buck. And if this happened just as the train was passing
over these railroad tracks, the railroad ties could crack
and split, the rails would splay out and the train would
derail.

And I said the hardest headed, hardest charging, type A
personalities would derail the worst.

Before I started my presentation in Front of the top Docs
of the Day, including Dr. Phil Lee, Dr. Paul Cheney,
Dr. Dan Peterson, Dr. David Bell, Dr. Jay Levy, dr. William
Reeves, et al, I said "I feel like a minor league pitcher
being brought up to pitch in the Hall of Fame game.... I
don't feel qualified to speak in front of the masters of the
game...".

But when I finished, Dr. Tony Komaroff who was chairing that
part of the conference said "I just want to tell the audience,
that this was a Major league pitcher throwing strike outs in
the World Series!"

Now, almost 19 years later, Dr. William Reeves of the CDC is
using American Tax dollars to do detailed blood tests, genetic
tests and psychological tests on new military recruits to try
and find out who might be more likely to come down with future
versions of "gulf war illness".

It is also a FACT, that I was the first person anywhere to
link "gulf war illness" with "all these whiney white women
who can't handle stress" (meaning CFS patients). This is on
tape. I said these comments on International TV, CNN's Larry
King Live on May 4, 1991.

I said "The US government will spend more than half a billion
dollars per day to blow Saddam Hussein back to the stone age,
but they won't spend even one million dollars per year to
treat the soldiers who are coming home sick. They have a
condition similar to what we have!".

A few years later, the brilliant Garth Nicholson, who has
published more than 400 papers on Cancer tumor cell biology
said, "Hennessy was right. Gulf war syndrome is not just
similar to CFS, it is almost identical".

A high ranking government official back in 1995 or 1996
called me at home and said "you will not believe what
happened today in a secret government meeting in Congress
about possible links between CFS and GWS.

The informant told me that the CDC's William Reeves, when
asked directly by a top Congressman "Is there any link
between CFS and GWS? that Reeves replied , "a Mr. Hennessy
and his group were right early and often. GWS doesn't
appear to be just one, new or unique illness. But it
closely resembles CFS. They might even be identical
syndromes!"

I have NEVER claimed that they were the same. I said that
they were similar and that we should use large relational
databases of symptoms and blood tests, autonomic nervous
system tests, neuroendocrine tests, objective, quantifiable,
verifiable tests that can be duplicated by even skeptical
scientists to prove that we are in fact not just disabled,
but GRAVELY ill.

As Dr. Marc Loveless said when I spoke to Dr. Alexis Shelekov
back in 1992 at the Albany Conference on CFS. I asked
Dr. Shelekov if the epidemic Neuromyesthenia that he studied
in the 1950's and early 1960's with dr. D. A. Henderson
could be the infamous "ME/CFS" of the early
1990's.

I asked Dr. Shelekov if had any treatment recommendations
for the "crippling, burning, searing nerve pain I felt all
over my body, 24/7. Pain that NEVER stops" and Dr. Shelekov
said "Tom, what you describe is worse than what we saw.
People were suffering and they aches and pains, but it
didn't feel life threatening". And I said "Dr. Shelekov,
with God as my witness, I feel like someone has twisted every
nerve and fiber in body into braids, then beaten to within
an inch of my life, all day, every day of my life. It is
brutal beyond imagination".

Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).

More later... hands cramping too much to type more now...

TMH

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