please email ABC regarding horribly slanted Nightline story on MCS

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_please email ABC regarding horribly slanted Nightline story on MCS _

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Please speak out regarding the recent slanted Nightline report on

environmental illness. The show was slanted in a way to discredit Dr. Rea, and

a UT

Southwestern allergist, Dr. Kahn dismissed all of Dr. Rea's patients as

mentally

ill. It is really important we speak out about this to both Southwestern

Medical Center and Nightline. I wrote long emails to both Nightline and the

President of Southwestern. I have written the Southwestern President before on

the same issue when one of it's doctors was cited in a D MAgazine article and

he was surprisingly responsive to me. Below is his secretaries email and a

rough draft of the email I wrote him. Below that is the contact info for

Nightline as well as the web address for the transcript. PLEASE, PLEASE, PLEASE

write something THOUGHTFUL and ARTICULATE as well as forward this to anyone you

think who would also write something. I had to really resist getting too angry

because I think arguments are more effective if we remain calm and

articulate.

Jenny

 

priscilla.alderman

Dr. Wildenthal,

 

I am writing regarding the allergist Dr. Kahn's recent statements on a

Nightline program addressing environmental illness. I find it unsettling that

Dr.

Kahn's sweeping dismissal of environmental illness as a mental health

disorder failed to acknowledge the recent genetic research that has found

certain

genetic variations in the ability to detoxify xenobioitcs in those manifesting

this illness, including myself.

 

Although I expect a teaching hospital to allow healthy debate to occur, I

think its disturbing and disheartening that every time someone from this

hospital speaks to the media regarding this disease, it is to do so in a wildly

speculative, recklessly skeptical and patently insensitive manner. And when

someone affiliated with your hospital and school diagnoses another physicians

30,000 patients he has never seen as having an undiagnosed mental disorder, it

not only continues the embarrassing tendency to dismiss any disease yet well

understood as a mental illness, but it almost rises to the level of medical

malpractice and ultimately slander. In effect, Dr. Kahn diagnosed me and

everyone of Dr. Rea's patients as mentally unwell simply by virtue of our

diagnosis

and physician.

 

I have masters degree in journalism, and am not only mentally well, but

mentally quite capable. After a very long battle with Lyme Disease complicated

by

CFIDS and environmental illness, I have slowly recovered from a devastating

state of disability, years of which I spent bed ridden in the prime of my

life. Previous to this, I was a double-major, straight-A student who ran seven

miles a day. I have walked an unspeakably hard journey back to health. And am

just starting a master's degree program in rehabilitation counseling at UNT,

where I think my professors could speak to my mental well being. But its

offensive that I even have to defend that. And it is soul crushing to have

someone who has never seen me offer a flip, insensitive diagnosis of me and

thousands of other patients, each with their own tragic, courageous and

redemptive

stories of struggle and recovery. But what is particularly disturbing is a

complete ignorance and disregard for the emerging research on this disease.

 

The same tendency happened with CFIDS, fibromyalgia and so many other

misunderstood diseases that have finally been validated by research. Even the

CDC

had to circulate a press release discussing the very real genetic variations

and medical manifestations associated with CFIDS, which had been ridiculed by

the media and the medical community. Many patients with environmental illness

have a co- diagnosis of CFIDS and doctors who treat both of these diseases

have long acknowledged the cross over of these conditions. These patients,

like myself, have very real medical conditions. I have low IGG levels, low NK

cells, low lymphocytes, chronically reactivated EBV/CVM/HHV-6, positive western

blot antibodies to Lyme Disease, low thyroid, low cortisol, low human growth

hormone and the list continues. Meanwhile, I have no mental health issues,

which my counselor who I see for disability adjustment issues and chronic

illness coping strategies can attest to. Although, depression and anxiety are

often co-conditions with environmental illness, this is a manifestation of the

disease not a psychological etiology. Neurotransmitters have to be processed

by the same phase one and two enzyme pathways as exogenous chemicals. And so

it makes sense there would be neurotransmitter imbalances in chemically

sensitive patients who have genetic anomalies in their detoxification pathways.

 

But I shouldn't have to argue the science. I'm just sad that this population

of people who lives have already been decimated by a devastating illness

continue to be maligned and misrepresented by physicians associated with your

hospital. I, like many other patients, have gone to UT southwestern for

treatment of secondary medical conditions. But shows like this give me pause,

and

make me reconsider ever using your medical center's services. All I can do, is

use my voice at this point, and continue to ask your hospital to raise the

level of the discussion. I am sure there are more patients of your center who,

like me, are offended by the stance representatives of this institution take

on this disease, with complete disregard for the emerging research.

 

Regardless of what the medical community thinks of Dr. Rea, this is a real

disease, and the research is proving it. And the legitimacy or illegitimacy of

one doctor's protocol for treating it in no way repudiates its existence.

That is an erroneous and illogical argument. Why is it the Achilles heal of the

medical community to malign the patient simply because they do not have a

understanding of the disease process? But even more, why is this tendency for

diagnosing " hysteria " repeated with every new disease without any reflection

or sense of learning from prior paradigm shifts in knowledge? This is one of

the few things I can recall with vivid memory from my own undergraduate studies

at Austin College where we studied medical paradigm shifts in medicine. And

the sad thing is, patients are forced to suffer a double-edge sword of having

a misunderstood and often untreatable disease that is then characterized as

a form of lunacy.

 

So instead of maligning this population of people, why not be on the

forefront of researching it? Why not set up a panel discussion among patients,

physicians and researchers? Why not break the mold and be ahead of the paradigm

shift instead of always behind it? I wouldn't write this letter if I didn't

have some kernel of hope in the medical community and this institution. I can

only hope that this hope manifests in real change.

 

Thank you for your time and consideration.

 

Sincerely,

 

Jennifer Land

 

You can read story transcript and post response here:

_http://abcnews.go.com/Health/comments?type=story & id=4489265_

(http://abcnews.go.com/Health/comments?type=story & id=4489265)

 

you can email Nightline here

_http://abcnews.go.com/Site/page?id=3072379_

(http://abcnews.go.com/Site/page?id=3072379)

 

you can call Nightline here

800-505-6139 (you have to ask to be rerouted to nightline)

 

I also got the email of someone at Nightline. her name is Sara and this is

what I wrote her.

 

 

Sarah,

 

As suggested when I spoke with you by phone, I writing you my concerns

regarding last night's show. Thank you for your willingness to forward this

information to the appropriate person.

 

As mentioned, I am a long-term viewer of Nighltine, which is probably one of

the reasons I was so caught off guard and disturbed by the slanted angle of

the story last night. I am also a former journalist for a major national

magazine and rely on Nightline and PBS for most of my news coverage because I

find it to be the only reliable, reflective, thoughtful TV news journalism

available, with last night being an unsettling exception. But more importantly,

I

am someone who's life has been decimated by environmental illness, a very

real disease that is finally being irrefutably validated by emerging genetic

research that was glaringly absent from your show last night. This is an

embarrassing trend in the medical community to dismiss any yet to be understood

disease as having a psychological etiology. And I find it equally embarrassing

when the media fails to ask questions about a pattern that is repeated over and

over again. Clearly we have not come far from the days of " female hysteria. "

We saw this happen with chronic fatigue immune disfunction disease (CFIDS)

and fibromyalgia until genetic research caused the CDC to put out a press

release educating the medical community and the public that this is a very real

disease characterized by very real genetic variations and susceptibilities and

very real medical abnormalities. And yet we still hear echos of inaccurate

rhetoric in phrases like " yuppie disease " because it take years to erase the

media perpetuated misperceptions in the public memory.

 

I also felt like it bordered on slander to allow another physician to offer

a diagnosis of mental illness to 30,000 patients of another physician he has

never seen. Why is it the reporter cornered Dr. Rea in the story, and asked

him for his peer review support but did not subject Dr. Khan to the same

scrutiny when even at face value it should appear inappropriate to diagnose

another physician's patients in a public forum and hold private citizens up for

ridicule and scrutiny? Dr. Khan wasn't just talking about environmental illness

in the abstract, he made this inaccurate, unsubstantiated, offensive

assessment of Dr. Rea's patients. When did I ask for his medical opinion about

me

much less ask ABC to air it before millions of people, including many of those

who know me and know Dr. Rea is my physician.

 

And instead of only asking for peer-reviewed journal publications, why

didn't you do an exhaustive literature search. Recent studies have shown a

genetic

susceptible to this disease. (Please see bottom of this email.) Even more

telling, the genetic variations are in genes responsible for detoxifying

exogenous chemical compounds like pesticides etc. It seems awfully

coounterituitive

to suggest that someone who has a genetic inability to normally process

chemical compounds really has a mental health disorder instead of chemical

sensitivities. That appears pretty absurd to me. As for " mental health " issues,

I

think it's natural that patients suffering from any disability would struggle

with depression, hence the existence of something called adjustment

counseling to learn strategies to cope with a chronic illness. There are also

researchers who have posited a connection between post traumatic stress syndrome

and

the triggering of the genetic tendency for chemical sensitivities. Studies of

patients with Gulf War Syndrome have underscored this, as many of these

patients also have post traumatic stress as well as chemical sensitivities.

 

Furthermore, the same liver enzymes responsible for detoxifying exogenous

chemical compounds and xenibiotics are also responsible for detoxifying

neurotransmitters and stress hormones like cortisol and epinephrine,

consequently it

makes sense that someone with genetic variations that effect these enzymes

would also have neurotransmitter imbalances, which are associated with

depression, anxiety and other mental health diagnoses.So mental health issues

can be

a complicating factor like they are in many illnesses. In addiction for

instance, which is now well understood as a brain disease with very real

physiological components and anomalies, there is almost always a psychological

co-diagnosis that does not invalidate the physiological basis of the disease.

 

Another fallacy perpetuated by this story was the illogical notion that you

can repudiate the existence of an illness based on the medical communities

view of one physician's treating protocol as illegitimate. Those are separate

arguments and it is false logic to connect them. Regardless of what someone

thinks of Dr. Rea, he was willing to treat thousands of suffering patients and

help many recover, and the perceived illegitimacy of his protocol does not

speak to whether this illness is real. It seems odd to me that thousands of

patients who are suffering are not only approached with skepticism but

insensitivity to what they have been through while Dr. Khan is handled with kid

gloves.

 

And what about the drug and chemical industry which by chance is the same

thing. All the drug companies are also the producers of pesticides, solvents

and the like - a pretty unholy union if you ask me. There are several well

written books on how this industry has created a business of suppressing the

existence of this illness, for which many might see them as liable. We have

seen

this same tendency in the vaccine and autism debate, which is also relevant

here because of the recent groundbreaking ruling where the government admitted

a connection between autism and vaccines in one case. The young girl in that

case has a father who has an MD PhD who was able to put forth the idea of a

genetic susceptibility to certain environmental contaminant like thimersol

causing a mitochondrial disease in certain susceptible populations.

Interestingly enough genetic research has already identified similar genetic

variants in

autism as in environmental illness, again dealing with genes responsible for

detoxifying xenobiotics. Regardless of whether science eventually proves

vaccines do or don't cause autism, we know that something environmental does by

virtue of the genetic research and the fact that autism has multiplied at

epidemic rates that implicate an environmental trigger.

 

And now I am going to close with a case study. I was a perfectly well

21-year old, straight-A, double-major student who ran seven miles a day before

suddenly becoming bedridden overnight from Lyme Disease I picked up from a tick

bite from my cross country runs. I went from working at at a major national

magazine to having to crawl on the floor to the bathroom. I lost more than ten

years of the prime of life. I developed CFIDS an environmental illness as a

complication of the Lyme Disease and its intensive treatment. This is a common

occurrence and there is much overlap of these very real diseases. Most

people with environmental illness have a co-diagnosis of chronic fatigue. So

these

are patients with an established disease and very real and documented

physical manifestations. I have low IGG levels, low lymphocytes, low NK cell

levels, chronically reactivated EBV, CMV and HHH-v-6, documented nerve damage in

my

face from Lyme Disease, positive western blots for Lyme Disease, low thyroid

levels, anti- thyroid antibodies, low cortisol levels and the list goes one.

 

So I take offense when a doctor who has never seen me says there is nothing

wrong with me but a mental illness. And I take further offense when a trusted

news source takes him at face value while remaining skeptical of thousands

of patients like me. Like many of those patients, I have faught back from the

brink of death. And as I slowly making my way back toward wellness, I have

recently begun school again for rehabilitation counseling so that I can provide

adjustment counseling for people struggling with chronic illnesses. Please

tell me why you are comfortable airing one demagogue's diagnosis of me when my

school, employment and medical record speaks to my mental balance. It's

disheartening and degraading that I even have to defend that on top of the

personal holocaust my body has been through. There is no other word that can

capture the devastation of this illness. And the Dr. Khan's flip dismissal of

its

legitimacy without even a reference to the emerging genetic research and other

research published in peer review journals like Environmental Health

Perspectives, which is put out by the NIH, only magnifies the devastation.

 

So in service to the truth, in service to your audience, and mostly in

service to the courageous survivors of this illness who all have moving stories

of

struggle, recovery and redemption to tell, I hope you set the record

straight with a follow-up to last night's story. I am at least hopeful

Nightline

wanted to do the story and attempted some level of balance. I just ask you to

be

reflective, the same way I always was about my own stories, and recognize

the moments where this story clearly reflected a bias and missed an opportunity

to educate the world about the emerging science behind this illness.

Hopefully one day I will see the true investigative story of this subject - the

one

that looks into the chemical industry and scrutinizes its suppression of this

disease. There is an entire, PR spin campaign sustained by this industry for

the sake of repudiating this illness, which seems like validation of the

illness to me. Call me crazy, but it seems a little crazy to spend millions of

dollars on this issue if we're all just a bunch of kooks.

 

In closing, thank you for your years or reliable news. I remain confident

you will eventually do this story justice.

 

Sincerely,

 

Jennifer Land

 

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