Please email ABC about horribly slanted Nighline article about MCS-please forwar

[Guest guest]

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 to angry because I

think are arguments are more effective if we remain calm and

articulate.

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 disease 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 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,

Land

You can read story transcript and post response here:

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

you can email Nightline here

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.j.hodd@...

,

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 devistation 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

devistation.

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 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,

Land