Re: One Million Sickos Forgotten

February 3, 2006

Awesome letter...thanks for writing and sharing with us. keeping my

fingers crossed for all of us : )

warmly, lisa

>

> This is my letter to . Cross your fingers....

>

> Sara

> ---------------------------------------------

> Hi, .

>

> I am, frankly, not expecting that anything will come of this e-

mail.

> I've been sick for 28 years with an illness that most doctors

don't

> believe exists. It has robbed me of a thriving career as a

(liberal)

> journalist, a marriage, a lifetime of income, and most of my

dignity.

>

> Which is why I'm writing it anyway.

>

> You're going to laugh the minute I tell you the name of the

disease

> that wrecked my life. It's called Chronic Fatigue Syndrome.

Remember

> that one? It got a lot of press in the late 80s as the " Yuppie

Flu "

> -- a disease of the rich, neurotic, and over-insured. It was

taken

> kinda seriously for a while....until the years rolled by, and the

> numbers of patients exploded, and the doctors got annoyed because

> they couldn't figure out what was causing it. Turned out that

most

> of the people who got it weren't even yuppies; in fact, three-

> quarters of them were women; and a huge number of them were poor

> people of color without access to doctors at all. (They really

lost

> interest after that.) So we got stuck with this silly disease

with

> this silly name -- and nothing in the way of care, social support,

or

> even public recognition.

>

> We're right in there with the AIDS patients as The Disease That

Must

> Not Speak Its Name. The only difference is that the AIDS patients

get

> piles of good drugs, piles of research money, and big celebrity-

> studded benefits. We get to hire lawyers just to convince Social

> Security (and, too often, our own doctors) that we're for real.

>

> The frightening truth is that CFS is an infectious disease.

Hundreds

> of outbreaks have been recorded around the world, many of them

> affecting entire cities. (Punta Gorda, FL got hit in 1956. Lake

> Tahoe, NV and Lyndonville, NY both saw epidemics in the winter of

> 1984.) It has swept through hospitals, dorms, and barracks like

mono,

> felling hundreds at a time. You'd think that an incurable,

> untreatable disease that's more contagious than AIDS, more

> debilitating than MS, and capable of wiping out entire towns in a

> single bound would attract the attention of government

researchers,

> or at least public health officials.

>

> But you'd be wrong. The CDC and the NIH spent over 20 years

ignoring

> us. From the beginning, a handful of influential psychiatrists

> decided that it was all in our heads. That opinion persists in

every

> corner of the medical establishment to this day, in defiance of

the

> thousands of peer-reviewed research papers documenting various

> aspects of our illness. At one point, in the late 90s, an

exasperated

> Congress insisted in giving the CDC about $10 million in research

> funds it didn't ask for, with the mandate that it produce some

actual

> CFS studies. The CDC spent $7 million of it on non-CFS related

> things. After a decade or two of this kind of thing, most of the

> country's best researchers got the message: if you value your

career,

> don't even be in the same room where they're discussing CFS. In

the

> meantime, those same psychiatrists (some of whom have ties to the

> insurance industry) have unrelentingly attempted to reclassify CFS

as

> a psychiatric disorder -- a phantom illness suffered by

> hypochondriacs caught up in an epic case of mass hysteria.

>

> In fairness, this situation has improved dramatically in the last

> couple of years, after the National Cancer Foundation started

funding

> studies of its own. Just this year, we're starting to see some

truly

> useful data from these investments. But for most of the past two

> decades, what little progress we've seen has been due to a few

> passionate clinicians who kept treating their patients, doing

their

> research on the side, comparing notes, and trying to find out

> whatever they could about the disease. Here's what they've learned

so

> far:

>

> There is no one germ that causes CFS. There are solid arguments

that

> it might be Epstein-Barr virus, cytomegalovirus, HHV-6, sackie,

or

> perhaps a retrovirus similar to HTLV-II (which causes MS). Other

> researchers think it might be an enterovirus, more akin to polio.

> There's a school that thinks it could be a bacterial or mold

> infection run amok. A huge number of CFS victims -- perhaps as

many

> as 80% -- test positive for Lyme Disease. While suicide is far

and

> away the leading cause of death, viral myocarditis -- congestive

> heart failure caused by a viral infection that destroys the heart -

-

> is a robust second.

>

> While we don't know what starts it, we're increasingly clear

about

> what happens once it gets going. The disease hits the central

nervous

> system, deep in the hippocampus. (You can often see the damaged

areas

> on a SPECT scan.) It fogs the brain; degrades the function of the

> hypothalamus, the adrenals, and the pituitary; and whacks out the

> immune system as well. The body seems to lose its ability to

process

> everyday toxins; and the cells seem to forget how to process

incoming

> energy. From there, a cascade of symptoms follow: loss of mental

> acuity (it's not uncommon for a CFS sufferer to lose 40+

functional

> IQ points); multiple chemical sensitivities (as the immune system

> spins out of control); loss of thyroid and adrenal function;

> increased toxicity throughout the body. The " fatigue " is not

fatigue

> as you know it; it's more like the worst day with a flu you ever

had.

> There's also " post-exertional malaise " -- a defining symptom of

CFS.

> All this means is that the slightest bit of exercise, like

climbing

> stairs or walking to the car (if you dare), can put you back in

bed

> for days. These days, they're thinking this might be a result of

the

> heart damage.

>

> Estimates are that there are nearly a million Americans living in

> quiet desperation with this disease. 70% of us will lose our

> marriages, and often our children. A large percentage of us go

> bankrupt, often losing our homes in the process. Almost none of

us

> have health insurance, of course: our disease may not really

exist,

> but that doesn't stop insurers from giving us the boot when they

find

> out we've got it. Once we lose our jobs, of course, the insurance

> question is moot anyway.

>

> Many of us find our symptoms improve in warm, dry climates; so we

end

> up living in trailers out on the deserts. Fewer than a third of

us

> will ever work again. Tens of thousands of us couch-surf, staying

> with friends and family for a while before moving on. Ninety-five

> percent of the people who get CFS never fully recover; we will

live

> with the disease for the rest of our lives.

>

> Even filmmakers get CFS. Blake has been struggling with

it

> since 1983. Hillenbrand, who wrote the book that inspired

> " Seabiscuit, " is also one of us. And there was a nice little

indie

> film made back in 2002 called " I Remember Me "

<www.irememberme.com>

> that sets out many of our issues very powerfully and succinctly.

If

> you're interested in knowing more, it might be a good place to

start.

>

> Weirdly, in the rest of the world, CFS has an actual medical

name.

> It's called " myalgic encephalomyelitis, " or ME; and the medical

> literature on it goes back to at least 1934. The World Health

> Organization has classified ME as a bona fide neuroimmune

disorder

> since 1969. The Canadian government (who else?) has a 114-page

case

> description and treatment protocol that is considered the best in

the

> world. (You can download the PDF at <http://www.cfids-

cab.org/MESA/

> ccpc.html>) Most of the rest of the planet, from Scandinavia to

> Japan, treats this disease like a serious public health issue;

and

> ensures that those who live with it get care and a basic standard

of

> living. But in the US and the UK, it's still " chronic fatigue

> syndrome " -- an imaginary disease of the terminally lazy and

> borderline crazy.

>

> CFS is a big subject, big enough for a movie of its own. If you

want

> to sic a researcher on the topic, the first reference book would

be

> " Osler's Web " by former Rolling Stone editor Hillary .

It's

> over a decade old -- you can find it used on Amazon -- but it's

still

> the most comprehensive history of the disease, the people

involved,

> and the issues surrounding it in print. As for websites: you'll

be

> off to a good start if you google up Dr. Cheney and Dr.

> Bell; or go to <www.ahummingbirdsguide.com>.

>

> Like I said: I don't expect you'll be able to work this into your

> movie. It's a long, complicated, hard story to tell. The amount

of

> human suffering and economic loss is staggering to even think

about.

> The public health implications and sheer government incompetence

> could cause riots of they were generally known. There are a lot

of

> good reasons so few people have ever tried to tell it. You would

be

> far from the first to take one look at the mess, and walk away.

>

> But I hope you won't.

>

> Sara

> US expat in Vancouver, BC

>

February 4, 2006

A great letter. Recognition by someone like would be so

great. Keeping my fingers crossed that he picks up this ball and runs

with it.

Gail

lgrasso_hawaii wrote:

> Awesome letter...thanks for writing and sharing with us. keeping my

> fingers crossed for all of us : )

>

> warmly, lisa

>

>> This is my letter to . Cross your fingers....

>>

>> Sara

>> ---------------------------------------------

>> Hi, .

>>

>> I am, frankly, not expecting that anything will come of this e-

>>

> mail.

>

>> I've been sick for 28 years with an illness that most doctors

>>

> don't

>

>> believe exists. It has robbed me of a thriving career as a

>>

> (liberal)

>

>> journalist, a marriage, a lifetime of income, and most of my

>>

> dignity.

>

>> Which is why I'm writing it anyway.

>>

>> You're going to laugh the minute I tell you the name of the

>>

> disease

>

>> that wrecked my life. It's called Chronic Fatigue Syndrome.

>>

> Remember

>

>> that one? It got a lot of press in the late 80s as the " Yuppie

>>

> Flu "

>

>> -- a disease of the rich, neurotic, and over-insured. It was

>>

> taken

>

>> kinda seriously for a while....until the years rolled by, and the

>> numbers of patients exploded, and the doctors got annoyed because

>> they couldn't figure out what was causing it. Turned out that

>>

> most

>

>> of the people who got it weren't even yuppies; in fact, three-

>> quarters of them were women; and a huge number of them were poor

>> people of color without access to doctors at all. (They really

>>

> lost

>

>> interest after that.) So we got stuck with this silly disease

>>

> with

>

>> this silly name -- and nothing in the way of care, social support,

>>

> or

>

>> even public recognition.

>>

>> We're right in there with the AIDS patients as The Disease That

>>

> Must

>

>> Not Speak Its Name. The only difference is that the AIDS patients

>>

> get

>

>> piles of good drugs, piles of research money, and big celebrity-

>> studded benefits. We get to hire lawyers just to convince Social

>> Security (and, too often, our own doctors) that we're for real.

>>

>> The frightening truth is that CFS is an infectious disease.

>>

> Hundreds

>

>> of outbreaks have been recorded around the world, many of them

>> affecting entire cities. (Punta Gorda, FL got hit in 1956. Lake

>> Tahoe, NV and Lyndonville, NY both saw epidemics in the winter of

>> 1984.) It has swept through hospitals, dorms, and barracks like

>>

> mono,

>

>> felling hundreds at a time. You'd think that an incurable,

>> untreatable disease that's more contagious than AIDS, more

>> debilitating than MS, and capable of wiping out entire towns in a

>> single bound would attract the attention of government

>>

> researchers,

>

>> or at least public health officials.

>>

>> But you'd be wrong. The CDC and the NIH spent over 20 years

>>

> ignoring

>

>> us. From the beginning, a handful of influential psychiatrists

>> decided that it was all in our heads. That opinion persists in

>>

> every

>

>> corner of the medical establishment to this day, in defiance of

>>

> the

>

>> thousands of peer-reviewed research papers documenting various

>> aspects of our illness. At one point, in the late 90s, an

>>

> exasperated

>

>> Congress insisted in giving the CDC about $10 million in research

>> funds it didn't ask for, with the mandate that it produce some

>>

> actual

>

>> CFS studies. The CDC spent $7 million of it on non-CFS related

>> things. After a decade or two of this kind of thing, most of the

>> country's best researchers got the message: if you value your

>>

> career,

>

>> don't even be in the same room where they're discussing CFS. In

>>

> the

>

>> meantime, those same psychiatrists (some of whom have ties to the

>> insurance industry) have unrelentingly attempted to reclassify CFS

>>

> as

>

>> a psychiatric disorder -- a phantom illness suffered by

>> hypochondriacs caught up in an epic case of mass hysteria.

>>

>> In fairness, this situation has improved dramatically in the last

>> couple of years, after the National Cancer Foundation started

>>

> funding

>

>> studies of its own. Just this year, we're starting to see some

>>

> truly

>

>> useful data from these investments. But for most of the past two

>> decades, what little progress we've seen has been due to a few

>> passionate clinicians who kept treating their patients, doing

>>

> their

>

>> research on the side, comparing notes, and trying to find out

>> whatever they could about the disease. Here's what they've learned

>>

> so

>

>> far:

>>

>> There is no one germ that causes CFS. There are solid arguments

>>

> that

>

>> it might be Epstein-Barr virus, cytomegalovirus, HHV-6, sackie,

>>

> or

>

>> perhaps a retrovirus similar to HTLV-II (which causes MS). Other

>> researchers think it might be an enterovirus, more akin to polio.

>> There's a school that thinks it could be a bacterial or mold

>> infection run amok. A huge number of CFS victims -- perhaps as

>>

> many

>

>> as 80% -- test positive for Lyme Disease. While suicide is far

>>

> and

>

>> away the leading cause of death, viral myocarditis -- congestive

>> heart failure caused by a viral infection that destroys the heart -

>>

> -

>

>> is a robust second.

>>

>> While we don't know what starts it, we're increasingly clear

>>

> about

>

>> what happens once it gets going. The disease hits the central

>>

> nervous

>

>> system, deep in the hippocampus. (You can often see the damaged

>>

> areas

>

>> on a SPECT scan.) It fogs the brain; degrades the function of the

>> hypothalamus, the adrenals, and the pituitary; and whacks out the

>> immune system as well. The body seems to lose its ability to

>>

> process

>

>> everyday toxins; and the cells seem to forget how to process

>>

> incoming

>

>> energy. From there, a cascade of symptoms follow: loss of mental

>> acuity (it's not uncommon for a CFS sufferer to lose 40+

>>

> functional

>

>> IQ points); multiple chemical sensitivities (as the immune system

>> spins out of control); loss of thyroid and adrenal function;

>> increased toxicity throughout the body. The " fatigue " is not

>>

> fatigue

>

>> as you know it; it's more like the worst day with a flu you ever

>>

> had.

>

>> There's also " post-exertional malaise " -- a defining symptom of

>>

> CFS.

>

>> All this means is that the slightest bit of exercise, like

>>

> climbing

>

>> stairs or walking to the car (if you dare), can put you back in

>>

> bed

>

>> for days. These days, they're thinking this might be a result of

>>

> the

>

>> heart damage.

>>

>> Estimates are that there are nearly a million Americans living in

>> quiet desperation with this disease. 70% of us will lose our

>> marriages, and often our children. A large percentage of us go

>> bankrupt, often losing our homes in the process. Almost none of

>>

> us

>

>> have health insurance, of course: our disease may not really

>>

> exist,

>

>> but that doesn't stop insurers from giving us the boot when they

>>

> find

>

>> out we've got it. Once we lose our jobs, of course, the insurance

>> question is moot anyway.

>>

>> Many of us find our symptoms improve in warm, dry climates; so we

>>

> end

>

>> up living in trailers out on the deserts. Fewer than a third of

>>

> us

>

>> will ever work again. Tens of thousands of us couch-surf, staying

>> with friends and family for a while before moving on. Ninety-five

>> percent of the people who get CFS never fully recover; we will

>>

> live

>

>> with the disease for the rest of our lives.

>>

>> Even filmmakers get CFS. Blake has been struggling with

>>

> it

>

>> since 1983. Hillenbrand, who wrote the book that inspired

>> " Seabiscuit, " is also one of us. And there was a nice little

>>

> indie

>

>> film made back in 2002 called " I Remember Me "

>>

> <www.irememberme.com>

>

>> that sets out many of our issues very powerfully and succinctly.

>>

> If

>

>> you're interested in knowing more, it might be a good place to

>>

> start.

>

>> Weirdly, in the rest of the world, CFS has an actual medical

>>

> name.

>

>> It's called " myalgic encephalomyelitis, " or ME; and the medical

>> literature on it goes back to at least 1934. The World Health

>> Organization has classified ME as a bona fide neuroimmune

>>

> disorder

>

>> since 1969. The Canadian government (who else?) has a 114-page

>>

> case

>

>> description and treatment protocol that is considered the best in

>>

> the

>

>> world. (You can download the PDF at <http://www.cfids-

>>

> cab.org/MESA/

>

>> ccpc.html>) Most of the rest of the planet, from Scandinavia to

>> Japan, treats this disease like a serious public health issue;

>>

> and

>

>> ensures that those who live with it get care and a basic standard

>>

> of

>

>> living. But in the US and the UK, it's still " chronic fatigue

>> syndrome " -- an imaginary disease of the terminally lazy and

>> borderline crazy.

>>

>> CFS is a big subject, big enough for a movie of its own. If you

>>

> want

>

>> to sic a researcher on the topic, the first reference book would

>>

> be

>

>> " Osler's Web " by former Rolling Stone editor Hillary .

>>

> It's

>

>> over a decade old -- you can find it used on Amazon -- but it's

>>

> still

>

>> the most comprehensive history of the disease, the people

>>

> involved,

>

>> and the issues surrounding it in print. As for websites: you'll

>>

> be

>

>> off to a good start if you google up Dr. Cheney and Dr.

>>

>

>> Bell; or go to <www.ahummingbirdsguide.com>.

>>

>> Like I said: I don't expect you'll be able to work this into your

>> movie. It's a long, complicated, hard story to tell. The amount

>>

> of

>

>> human suffering and economic loss is staggering to even think

>>

> about.

>

>> The public health implications and sheer government incompetence

>> could cause riots of they were generally known. There are a lot

>>

> of

>

>> good reasons so few people have ever tried to tell it. You would

>>

> be

>

>> far from the first to take one look at the mess, and walk away.

>>

>> But I hope you won't.

>>

>> Sara

>> US expat in Vancouver, BC

>>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

February 4, 2006

Sara,

I love this letter, and hope you don't mind if I fwd it to my family,

this explains what I have been trying to say to them for years, but much

more dramatically..

BTW, my background is related a bit to this type of project, I am a

former educational researcher and have written scripts for multimedia

productions. I like your spin on this issue, I would also mention the

new CFS-type illnesses among people who helped with the 911 clean-up,

and also GWI.

I imagine MM is after the pharmaceutical cartel, so he probably is going

to try and expose the truth about the Vioxx scandal and government

involvement (particularly the lackadaisical attitude of the current

administration in not holding the industry accountable for 60,000+

deaths).

--Kurt

www.kurtrowley.com <http://www.kurtrowley.com/>

SPAM-LOW: One Million Sickos Forgotten

This is my letter to . Cross your fingers....

Sara

---------------------------------------------

Hi, .

I am, frankly, not expecting that anything will come of this e-mail.

I've been sick for 28 years with an illness that most doctors don't

believe exists. It has robbed me of a thriving career as a (liberal)

journalist, a marriage, a lifetime of income, and most of my dignity.

Which is why I'm writing it anyway.

You're going to laugh the minute I tell you the name of the disease

that wrecked my life. It's called Chronic Fatigue Syndrome. Remember

that one? It got a lot of press in the late 80s as the " Yuppie Flu "

-- a disease of the rich, neurotic, and over-insured. It was taken

kinda seriously for a while....until the years rolled by, and the

numbers of patients exploded, and the doctors got annoyed because

they couldn't figure out what was causing it. Turned out that most

of the people who got it weren't even yuppies; in fact, three-

quarters of them were women; and a huge number of them were poor

people of color without access to doctors at all. (They really lost

interest after that.) So we got stuck with this silly disease with

this silly name -- and nothing in the way of care, social support, or

even public recognition.

We're right in there with the AIDS patients as The Disease That Must

Not Speak Its Name. The only difference is that the AIDS patients get

piles of good drugs, piles of research money, and big celebrity-

studded benefits. We get to hire lawyers just to convince Social

Security (and, too often, our own doctors) that we're for real.

The frightening truth is that CFS is an infectious disease. Hundreds

of outbreaks have been recorded around the world, many of them

affecting entire cities. (Punta Gorda, FL got hit in 1956. Lake

Tahoe, NV and Lyndonville, NY both saw epidemics in the winter of

1984.) It has swept through hospitals, dorms, and barracks like mono,

felling hundreds at a time. You'd think that an incurable,

untreatable disease that's more contagious than AIDS, more

debilitating than MS, and capable of wiping out entire towns in a

single bound would attract the attention of government researchers,

or at least public health officials.

But you'd be wrong. The CDC and the NIH spent over 20 years ignoring

us. From the beginning, a handful of influential psychiatrists

decided that it was all in our heads. That opinion persists in every

corner of the medical establishment to this day, in defiance of the

thousands of peer-reviewed research papers documenting various

aspects of our illness. At one point, in the late 90s, an exasperated

Congress insisted in giving the CDC about $10 million in research

funds it didn't ask for, with the mandate that it produce some actual

CFS studies. The CDC spent $7 million of it on non-CFS related

things. After a decade or two of this kind of thing, most of the

country's best researchers got the message: if you value your career,

don't even be in the same room where they're discussing CFS. In the

meantime, those same psychiatrists (some of whom have ties to the

insurance industry) have unrelentingly attempted to reclassify CFS as

a psychiatric disorder -- a phantom illness suffered by

hypochondriacs caught up in an epic case of mass hysteria.

In fairness, this situation has improved dramatically in the last

couple of years, after the National Cancer Foundation started funding

studies of its own. Just this year, we're starting to see some truly

useful data from these investments. But for most of the past two

decades, what little progress we've seen has been due to a few

passionate clinicians who kept treating their patients, doing their

research on the side, comparing notes, and trying to find out

whatever they could about the disease. Here's what they've learned so

far:

There is no one germ that causes CFS. There are solid arguments that

it might be Epstein-Barr virus, cytomegalovirus, HHV-6, sackie, or

perhaps a retrovirus similar to HTLV-II (which causes MS). Other

researchers think it might be an enterovirus, more akin to polio.

There's a school that thinks it could be a bacterial or mold

infection run amok. A huge number of CFS victims -- perhaps as many

as 80% -- test positive for Lyme Disease. While suicide is far and

away the leading cause of death, viral myocarditis -- congestive

heart failure caused by a viral infection that destroys the heart --

is a robust second.

While we don't know what starts it, we're increasingly clear about

what happens once it gets going. The disease hits the central nervous

system, deep in the hippocampus. (You can often see the damaged areas

on a SPECT scan.) It fogs the brain; degrades the function of the

hypothalamus, the adrenals, and the pituitary; and whacks out the

immune system as well. The body seems to lose its ability to process

everyday toxins; and the cells seem to forget how to process incoming

energy. From there, a cascade of symptoms follow: loss of mental

acuity (it's not uncommon for a CFS sufferer to lose 40+ functional

IQ points); multiple chemical sensitivities (as the immune system

spins out of control); loss of thyroid and adrenal function;

increased toxicity throughout the body. The " fatigue " is not fatigue

as you know it; it's more like the worst day with a flu you ever had.

There's also " post-exertional malaise " -- a defining symptom of CFS.

All this means is that the slightest bit of exercise, like climbing

stairs or walking to the car (if you dare), can put you back in bed

for days. These days, they're thinking this might be a result of the

heart damage.

Estimates are that there are nearly a million Americans living in

quiet desperation with this disease. 70% of us will lose our

marriages, and often our children. A large percentage of us go

bankrupt, often losing our homes in the process. Almost none of us

have health insurance, of course: our disease may not really exist,

but that doesn't stop insurers from giving us the boot when they find

out we've got it. Once we lose our jobs, of course, the insurance

question is moot anyway.

Many of us find our symptoms improve in warm, dry climates; so we end

up living in trailers out on the deserts. Fewer than a third of us

will ever work again. Tens of thousands of us couch-surf, staying

with friends and family for a while before moving on. Ninety-five

percent of the people who get CFS never fully recover; we will live

with the disease for the rest of our lives.

Even filmmakers get CFS. Blake has been struggling with it

since 1983. Hillenbrand, who wrote the book that inspired

" Seabiscuit, " is also one of us. And there was a nice little indie

film made back in 2002 called " I Remember Me " <www.irememberme.com>

that sets out many of our issues very powerfully and succinctly. If

you're interested in knowing more, it might be a good place to start.

Weirdly, in the rest of the world, CFS has an actual medical name.

It's called " myalgic encephalomyelitis, " or ME; and the medical

literature on it goes back to at least 1934. The World Health

Organization has classified ME as a bona fide neuroimmune disorder

since 1969. The Canadian government (who else?) has a 114-page case

description and treatment protocol that is considered the best in the

world. (You can download the PDF at <http://www.cfids-cab.org/MESA/

ccpc.html>) Most of the rest of the planet, from Scandinavia to

Japan, treats this disease like a serious public health issue; and

ensures that those who live with it get care and a basic standard of

living. But in the US and the UK, it's still " chronic fatigue

syndrome " -- an imaginary disease of the terminally lazy and

borderline crazy.

CFS is a big subject, big enough for a movie of its own. If you want

to sic a researcher on the topic, the first reference book would be

" Osler's Web " by former Rolling Stone editor Hillary . It's

over a decade old -- you can find it used on Amazon -- but it's still

the most comprehensive history of the disease, the people involved,

and the issues surrounding it in print. As for websites: you'll be

off to a good start if you google up Dr. Cheney and Dr.

Bell; or go to <www.ahummingbirdsguide.com>.

Like I said: I don't expect you'll be able to work this into your

movie. It's a long, complicated, hard story to tell. The amount of

human suffering and economic loss is staggering to even think about.

The public health implications and sheer government incompetence

could cause riots of they were generally known. There are a lot of

good reasons so few people have ever tried to tell it. You would be

far from the first to take one look at the mess, and walk away.

But I hope you won't.

Sara

US expat in Vancouver, BC

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

February 4, 2006

On Feb 4, 2006, at 7:11 AM, Kurt R. wrote:

> Sara,

>

> I love this letter, and hope you don't mind if I fwd it to my family,

> this explains what I have been trying to say to them for years, but

> much

> more dramatically..

>

> BTW, my background is related a bit to this type of project, I am a

> former educational researcher and have written scripts for multimedia

> productions. I like your spin on this issue, I would also mention

> the

> new CFS-type illnesses among people who helped with the 911 clean-up,

> and also GWI.

>

> I imagine MM is after the pharmaceutical cartel, so he probably is

> going

> to try and expose the truth about the Vioxx scandal and government

> involvement (particularly the lackadaisical attitude of the current

> administration in not holding the industry accountable for 60,000+

> deaths).

I'm good with that, too. My robustly healthy 66-year-old mother, who

weighed 130 pounds, exercised four times a week, had her cholesterol

under firm control, and ate a diet that was a cardiologist's dream --

in other words, was nobody's candidate for heart problems -- had a

heart attack five months after starting on Vioxx.

She's fine now; her most recent exam showed no damage at all. But it

was a year she didn't need to spend recovering from something so

avoidable.

She is party to some of the lawsuits that have been going on. Go,

!

Sara

February 5, 2006

I thought it was a great email too. But I doubt its what he's looking

for. What would be great is the story of the CDC's bastardization of

lyme testing, removing diagnostic bands for the sake of a vaccine that

didn't work out, leaving multitudes undiagnosed, and then all the

bullcrap around STARI, which is essentially lyme, Masters fighting

them for years and years, finally they call it STARI, and basically

its just borrelia, maybe a different strain, and no it is not benign,

so someone recently died of it! (At age 37) Because she could not get

treatment.

I would tend to think, being the brilliant film maker he is, he wants

storiees esp of govt or pharmaceutical corruption. But, I'm not in the

mood to write such a letter, but if someone else would that would be

great.

>

> Dear All:

>

> Thanks for all the e-mails asking if you can pass this on. Yes, yes,

> yes. Please feel free to distribute it wherever you think it might do

> some good.

>

> I have only two requests:

>

> 1. Please use the slightly edited version below, rather than the

> earlier one. (I knocked this out in about 45 minutes, and didn't take

> enough time to do a final polish before I hit the send button. Once I

> let it mellow for another couple hours, I started seeing things I

> wanted to change. It's a better, stronger piece for these changes.)

>

> 2. Writers are usually underpaid. In cases like this, all we get is

> the ego charge of seeing our by-lines on our work. So, please, as you

> pass it on, make sure my name and e-mail stay attached to it. If you

> can't feed my kids, at least feed my vanity. Thanks. And bless you all.

>

> Sara (srobinson@...)

>

------------------------------------------------------------------------

>

------------------------------------------------------------------------

> -----

>

> Hi, .

>

> I am, frankly, not expecting that anything will come of this e-mail.

> I've been sick for 28 years with an illness that most doctors don't

> believe exists. It has robbed me of a thriving career as a (liberal)

> journalist, a marriage, a lifetime of income, and most of my dignity.

>

> Which is why I'm writing it anyway.

>

> You're going to laugh the minute I tell you the name of the disease

> that wrecked my life. It's called Chronic Fatigue Syndrome. Remember

> that one? It got a lot of press in the late 80s as the " Yuppie Flu "

> -- a disease of the rich, neurotic, and over-insured. It was taken

> kinda seriously for a while....until the years rolled by, and the

> numbers of patients exploded, and the doctors got annoyed because

> they couldn't figure out what was causing it. Turned out that most

> of the people who got it weren't even yuppies; in fact, three-

> quarters of them were women; and a huge number of them were poor

> people of color without access to doctors at all. (They really lost

> interest after that.) So we got stuck with this silly disease with

> this silly name -- and nothing in the way of care, social support, or

> even public recognition.

>

> We're right in there with the AIDS patients as The Disease That Dare

> Not Speak Its Name. The only difference is that the AIDS patients get

> good drugs, piles of research money, and big celebrity-studded

> benefits. We get to hire lawyers we can't afford just to convince

> Social Security (and, too often, our own doctors) that we're for real.

>

> The frightening truth is that CFS is an infectious disease. Hundreds

> of outbreaks have been recorded around the world, many of them

> affecting entire cities. (Punta Gorda, FL got hit in 1956. Incline

> Village, NV and Lyndonville, NY both saw epidemics in the winter of

> 1984.) It has swept through hospitals, dorms, and barracks like mono,

> felling hundreds at a time. You'd think that an incurable,

> untreatable disease that's more contagious than AIDS, more

> debilitating than MS, and capable of wiping out entire towns in a

> single bound would attract the attention of government researchers,

> or at least public health officials.

>

> But you'd be wrong. The CDC and the NIH spent over 20 years ignoring

> us. From the beginning, a handful of influential psychiatrists

> decided that it was all in our heads. That opinion persists in every

> corner of the medical establishment to this day, in defiance of the

> thousands of peer-reviewed research papers documenting the very real

> effects of our illness. At one point, in the late 90s, an exasperated

> Congress insisted in giving the CDC about $10 million in research

> funds it didn't ask for, with the mandate that it produce some actual

> CFS studies. The CDC spent $7 million of it on non-CFS related stuff.

> After a decade or two of this kind of thing, most of the country's

> best researchers got the message: if you value your career, don't

> even be in the same room where they're discussing CFS. In the

> meantime, those same psychiatrists (some of whom have ties to the

> insurance industry, which has a strong economic incentive to keep us

> off their books) have unrelentingly attempted to reclassify CFS as a

> psychiatric disorder -- a phantom illness suffered by hypochondriacs

> caught up in an epic case of mass hysteria.

>

> In fairness, this situation has improved dramatically in the last

> couple of years, after the National Cancer Foundation started funding

> studies of its own. Just this year, we're starting to see some truly

> useful data from these investments. But for most of the past two

> decades, what little progress we've seen has been due to a few

> passionate clinicians who kept treating their patients, doing their

> research on the side, comparing notes, and trying to find out

> whatever they could about the disease. Here's what they've learned so

> far:

>

> There is no one germ that causes CFS. There are solid arguments that

> it might be Epstein-Barr virus, cytomegalovirus, HHV-6, sackie, or

> perhaps a retrovirus similar to HTLV-II (which causes MS). Other

> serious researchers think it might be an enterovirus, more akin to

> polio. There's also a very credible school that thinks it could be a

> bacterial or mold infection run amok. A huge number of CFS victims --

> perhaps as many as 80% -- test positive for Lyme Disease. While

> suicide is far and away the leading cause of death, autopsies are now

> revealing that viral myocarditis -- congestive heart failure caused

> by a viral infection that destroys the heart -- is a robust second.

>

> While we don't know what starts it, we're increasingly clear about

> what happens once it gets going. The disease hits the central nervous

> system, deep in the hippocampus. (You can often see the damaged areas

> on a SPECT scan.) It fogs the brain; degrades the function of the

> hypothalamus, the adrenals, and the pituitary; and whacks out the

> immune system as well. The body loses its ability to process everyday

> toxins; and the cells forget how to use incoming energy. From there,

> a cascade of symptoms follow: loss of mental acuity (it's not

> uncommon for a CFS sufferer to lose 40+ functional IQ points);

> multiple chemical sensitivities (as the immune system spins out of

> control); loss of thyroid and adrenal function; increased toxicity

> throughout the body. The " fatigue " is not fatigue as you know it;

> it's more like the worst day with a flu you ever had -- every day,

> for the rest of your life. There's also " post-exertional malaise, "

> which is a defining symptom of CFS. The slightest bit of exercise,

> like climbing stairs or walking to the car (if you dare), can put you

> back in bed for days. There's growing evidence this might be a result

> of the heart damage.

>

> Estimates are that nearly a million Americans live in quiet

> desperation with this disease. Seventy percent of us will lose our

> marriages, and often our children. A large percentage of us go

> bankrupt, usually losing our homes in the process. Almost none of us

> have health insurance, of course: our disease may not really exist,

> but that doesn't stop insurers from giving us the boot when they find

> out we've got it. Once we lose our jobs, of course, the insurance

> question is moot anyway. Fewer than a third of us will ever work again.

>

> Many of us find our symptoms improve in warm, dry climates; so we end

> up living in trailers out on the deserts. Tens of thousands of us

> couch-surf, staying with friends and family for a while before moving

> on. Ninety-five percent of the people who get CFS never fully

> recover; we will live with the disease for the rest of our lives.

>

> Even filmmakers get CFS. Blake has been struggling with it

> since 1983. Hillenbrand, who wrote the book that inspired

> " Seabiscuit, " is also one of us. And there was a nice little indie

> film made back in 2002 called " I Remember Me " <www.irememberme.com>

> that sets out many of our issues very powerfully and succinctly. If

> you're interested in knowing more, it might be a good place to start.

>

> Weirdly, in the rest of the world, CFS has an actual medical name.

> It's called " myalgic encephalomyelitis, " or ME; and the medical

> literature on it goes back to at least 1934. The World Health

> Organization classified ME as a bona fide neuroimmune disorder in

> 1969. The Canadian government (who else?) has a 114-page case

> description and treatment protocol that is considered the best in the

> world. (You can download the PDF at <http://www.cfids-cab.org/MESA/

> ccpc.html>) Most of the rest of the planet, from Scandinavia to

> Japan, treats this disease like a serious public health issue; and

> ensures that those who live with it get care and a basic standard of

> living. But in the US and the UK, it's still " chronic fatigue

> syndrome " -- an imaginary disease of the terminally lazy and

> borderline crazy.

>

> CFS is a big subject, big enough for a movie of its own. If you want

> to sic a researcher on the topic, the first reference book would be

> " Osler's Web " by former Rolling Stone editor Hillary . It's

> over a decade old -- you can find it used on Amazon -- but it's still

> the most comprehensive history of the disease, the people involved,

> and the issues surrounding it in print. As for websites: you'll be

> off to a good start if you google up Dr. Cheney and Dr.

> Bell; or go to <www.ahummingbirdsguide.com>.

>

> Like I said: I don't expect you'll be able to work this into your

> movie. It's a long, complicated, hard story to tell. The amount of

> human suffering and economic loss is staggering to even think about.

> The public health implications and sheer government incompetence

> could cause riots of they were generally known. There are a lot of

> good reasons so few people have ever tried to tell it. You would be

> far from the first to take one look at the mess, and walk away.

>

> But I hope you won't.

>

> Sara

> US expat in Vancouver, BC

>

February 6, 2006

Sara,

Late getting to the posts. Am keeping my fingers crossed. This is one of the

reasons I had posted earlier about how many had been DX with mono. I know that

this so called yuppi flu was rampant during the Vietnam War. And still is.

My Ex was in the AForce and was so ill. A very well written article. Should

be sent to all like CBS, NBC, FOX, etc. I know there is a mutation in the

virus..<they say EBV> and so many of us have Fibro also.

Keeping my fingers crossed Sara.

--- Mercuria <mercuria@...> wrote: