My letter to Time & SF Chronicle

[Guest guest]

Wednesday, May 08, 2002

It's 3:15 am and I awake with a start. I can no longer put off writing

this letter and sharing this horrific story. The reason… it involves all of

us. Unlike a fictional thriller, this is real, daunting, alarming, and much

too silent. We are all touched by this story to some degree, and with the

passing of time, it will move from the sixth degree to the first degree for

the entire population! A story so complicated to tell, but so simple in

reality. A story that needs to be headlined internationally, so that we can

put our heads, hearts, and pocket books together to reverse this nasty robber

of our future.

Many, no, numerous articles have been published and aired about Autism,

especially in the past five years. While I am thankful for the campaign for

Autism awareness, I am reminded of what awareness campaigns did and did not

do for Chronic Fatigue Syndrome sufferers in the 80's. It's just not enough.

The information is incomplete, has missed its mark, and is misleading. We

are reading and viewing that " Autism is sharply rising in epidemic

proportions " . One in 10,000 were diagnosed with this disorder 10 years ago,

and now, conservatively, it's at 1 in 300. Chronic Fatigue Syndrome (CFS)

growth records indicate a parallel in statistics. And surprisingly (or not

surprisingly), Attention Deficit Disorders (ADD) and Learning disorders

(LD's) are increasing at a similar rate.

Doctors and others are questioning, " is it just better diagnostic

techniques? " Were these autistic children missed in the past? I think NOT!

No one can MISS a child with Autism. At the very least, they would have been

grouped into another disability. Past and present statistics will dispel

that theory. Other disabilities are increasing as they always have at a much

slower rate (a small percentage equivocal to the increase in population).

People (adults and children alike) with CFS are stigmatized as lazy, not

wanting to work, plagued by a self wrought psychological disorder, in other

words, a hypochondriacal farce. However, the majority of folks diagnosed with

this disease are type A's- hard workers, intelligent, goal oriented, leaders

and top contributors in their field. The causation of ADD in children is

often blamed on poor parenting. But when neuro-spect scan results show a

decrease in the blood and oxygen flow to their brains, yielding brain damage

effecting the very areas corresponding to their impairment, that opinion

falls apart.

Does anyone want to know the real story? The connection between these

misunderstood diseases, (yes DISEASES, not psychological, not developmental,

not purely neurological disorders!), why they are growing at such an alarming

rate, and what can be done to stop them today? If not, stop reading HERE.

Autism, ADD, LD's and CFS are common words used in my home. , my

10-year-old daughter with liquid brown eyes and lacy lashes, bears the Autism

diagnosis. Meghan, my bouncing blonde 13 yr old stepdaughter is labeled with

ADHD, Learning disabilities, and Chronic Fatigue Syndrome. And as if that's

not enough, I was diagnosed with dyslexia as a child, and have been plagued

with CFS and autoimmune disease for the past 12 years (It just feels like I

have the flu most of the time!). My family refers to all of these checklist

disorders as (Neuro-Immune Dysfunction Syndromes). We believe they are

one and the same, and here's why:

Simply, the three of us have overlapping signs and symptoms (headaches,

low grade fevers, bowel problems, sleep problems, cognition difficulties etc,

etc…you get the picture). Our blood work indicates common abnormality

markers (viral activation, low natural killers, high lymphocytes, etc.).

Our medical histories are colored with similar pre-dispositions (for starters

my father: ulcerative colitis, sister: bi-polar manic depression, 's dad

and half brother: ADD, Meghan's birth mother, Anxiety disorder, food

intolerances, and suspected CFS). And, we are all three using the same

treatment protocol, which has been the only safe, successful medical

intervention for us.

Oh, but we are not unique. I receive several calls each week from

different families who echo this situation. Families, who like us, struggle

to survive physically, emotionally and financially. Families who are

constantly tugging with the education systems, state and federal disability

service providers and medical insurance companies who refuse to cover many

needed services. Families with chronically ill adults raising disabled

children!

So, the problem: diseases growing at an alarming compounded

rate-crunch the numbers for Autism alone, and we are looking at a likely

increase to one in 25 in the next ten years? Stay tuned for the answer to

the problem.

OK, so what exactly is ? Well, if I were teaching a course in

101, I'd introduce you to this phenomenon with a paper entitled " The Myth of

Autism " , by Dr. Goldberg (see attached). Your textbook would be

" The Virus Within, A Coming Epidemic " by Regush. And your

assignment would be to fund the cure. No, I didn't mean, " FIND " the cure, I

meant " FUND " it.

Let me introduce you to Dr. Goldberg (www.NeuroImmuneDr.com). He is a

clinical pediatric practitioner in Tarzana, California. Elyse, his lovely

and gifted wife who was diagnosed with CFS years ago, is his primary

motivation. Autism, ADHD, LD's and CFS are his specialty…only he labeled

them appropriately as (Neuro-immune Dysfunction Syndromes) and

classifies as a disease. He is currently providing patients some relief

with a safe, effective interim treatment. This treatment protocol is not a

cure, but provides hope for patients until a cure is available.

" Can't have an epidemic of genetic causation, " he says (and rightly

so), " has to be a disease process. " Science backs that claim. Dr. G. is not

alone in this mindset. Other prominent researchers and clinicians are

arriving at the same conclusion independently, internationally. Fortunately,

Dr. G. has pulled some of these noted professionals together to form an

assault team (in my humble opinion, the navy seals of the medical

profession!)

The Research Institute and Coalition includes this assault team as

the " Medical Advisory Board " . The attached " Hypothesis Statement "

explains and backs their collective stand on these diseases. Families

effected by and other professionals comprise the " Coalition " part of

this entity. The Coalition is incorporated with a board of directors.

I'm one of them. Now, for the big news... the Research Institute has

designed a plan to investigate immune modulators as a cure for these diseases…

yes a plan which has us ready to start clinical trials NOW! (Dr. G's major

goal is " to cure THIS generation! " He says that these kids are " tomorrow's

leaders " , so there's no time to waste). The Coalition's job is to FUND

it. Remember that word?

So, we've identified the problem, we're sitting on the answer, and all

we need is money to put it in motion. We have both a for-profit and a

non-profit plan and pharmaceutical companies ready to participate. 6 million

dollars will get us going and about 18 million will complete the task. A

large but undaunting amount when you consider the huge savings to our

society. Housing, food, Medicare, social security, special education, etc.

present enormous lifetime costs if these people go untreated. Not to

mention, reversing the effects of this disease will reverse dependent

citizens to producing taxpayers.

But most importantly, sufferers were NOT born this way---these are

NOT developmental disorders or birth defects. First hand, I can tell you

that not only are kids and adults sick, but most of them feel sick as

well. These illnesses are physically painful, and emotionally and

financially draining- tearing apart families and devastating lives.

How can you help? Spread this information and FUND the immune

modulators project. We can all pull together to change our medical destiny!

How can we help you? Contact us at: www..net. E-mail me (Tina Hendrix)

at Cure2000@... or telephone at (707)538-2193 in Santa , CA.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.