An email i sent to the CDC in Sept...

[emilyawhite]

hey guys...I just stumbled upon an email I sent to the CDC back in sept. in response to their generic reply letter telling morgies to "seek help from local practitioner."

Anyway, upon re-read it kicked a*s and am damn proud to have sent it to them, regardless of the fact that it probably made zero difference.

From: Morgellons Syndrome (CDC) [mailto:MorgellonsSyndrome@cdc.gov]
Sent: Wednesday, September 05, 2007 5:05 AM
To: Emily A. White
Subject: CDC Morgellons Working Group Response
Thank you for your inquiry regarding the unexplained dermopathy(skin condition) which some refer to as “Morgellons.” To learn more about CDC's activities related to this condition and answers to frequently asked questions, you should visit www.cdc.gov/unexplaineddermopathy. This web site is regularly updated as new information becomes available.

Because CDC has no clinical facilities to evaluate or treat patients, we urge persons who believe they are suffering from this condition or who have distressing symptoms to seek evaluation and medical care from their local health care providers.

From: Emily A. White [mailto:emily_anne_white@yahoo.com]
Sent: Wednesday, September 05, 2007 5:38 AM
To: 'Morgellons Syndrome (CDC)'
Subject: RE: CDC Morgellons Working Group Response


I apologize for the blunt response to your automatic reply recommending sufferers to seek help via “local” medical professionals, however, I live in Stafford Springs, CT, and none of the dozen doctors I’ve entrusted with my welfare for over a year in search of answers to a perplexing and ever-unfolding array of oftentimes inexplicable and non-textbook symptoms (i.e. I’ve been cast in a sci-fi movie and wake up each day with one wish: no more surprises from within my freak-show of a once perfectly healthy twenty-year old body) have:

(a) listened to my symptoms without speculation and express reference to my “anxiety” as a (now former) “law-student” and on one occasion an outright deferral to the psychiatric conditions accompanying this disease (extreme depression and anxiety) after giving me a superficial physical exam—at best;

(b) considered any culprit other than that which the standard rounds of lab tests revealed (normal labs = you’re fine, thanks for the paycheck) and, putting it politely, replaced the Oslarian Ideal with a preconceived diagnosis (“if it isn’t Lyme or Cancer or some other diagnosis rooted in lab work and absent any need for cognitive function, you’re fine and your suffering isn’t my problem.”);

(c) and most importantly, exacerbated the situation by blaming a competent individual with a prior history of over-achievement and success and failing miserably to keep up-to-date with emerging—and of course unexplainable via lab testing—syndromes—a situation which is only recognized after prolonged suffering in hindsight by this individual.

The first day of my search for help beginning with my primary care physician and a reflexive “scratch of the head” following “normal” lab results was back in May 2006, upon college graduation; little did I know that people were suffering worldwide—and by the thousands nationwide—of a disease referred to as “Morgellons” which commonly manifested itself with general “could be Lyme” symptoms; unfortunately, I perhaps naively (rightly so at 23 and in reference to our seemingly stringent requirements for a medical degree—so as the everyday man could pursue another endeavor and trust his health was taken care of by “professionals), assumed a doctor would find and fix some textbook condition so as I could continue my pursuit of a law degree.

Our healthcare professionals are sub-par and unfortunately negligent by legal standards with regard to the shoes our societal structure lends us to believe is filled by such individuals by and large. A generalization, in this case and although not applicable to most situations, is warranted. There is no recourse for most if not all of the people with this syndrome at the local level—at least initially, and in my case, ever.

Please, take the healthcare crisis I never imagined to be in existence in such an objectively strong country seriously; the only persons—although enough by democratic standards admittedly—fooled by such a deferment are those unaffected and oftentimes the very family and friends who once respected the competency and very sanity of those suffering.

My family had me committed to a psych ward and in the absence of my “admitting a drug addiction” wishes no longer to communicate let alone support emotionally or financially (I’m now a present-day and inevitable future financial burden on this country, and was once a promising productive member of society).

There’s too much pain and suffering to bury under the carpet…too much for any individual to have to cope with on a daily basis.


Take care,


Emily A. White

TAke that *****a*ses. I'm so proud of that one. :-) Can you feel the anger folks?!?

em

[Kritters]

MOST EXCELLENT, EMILY!!!!



Kritts

[emilyawhite]

yep absolutely b*tchin'...don't think I can write that well anymore this thing has dumbed me down lol.

[Sunshine]

Wow, great writing honey child. In your twenties, your whole life ahead. I have a daughter also whom I hope is able to live her life to it's fullest and I'm going to do my damdest to make that happen. For now I am going to try and live my fiber covered life as best I can with the occasional scathing letters to legislature and hopefully legal council one day. I've not spoken to the ACLU as of yet but have been kicking the idea around for sometime. It is quite odd in this country that there is a "Bill of Patient Rights" but it ONLY seems to have been written for Medicaid patients. Weird thing. Correct me if I'm wrong. If I had the strength and wherewithall to go after a particular dermotologist I would do so. I know that the failure to treat is tough to prove but given the proper attention this situation is ripe for setting precedent. The gold standard is so subjective but it is usually argued by an "expert" who is trotted in front of a jury and is only as effective as that "expert" would have a jury believe.
The evidence is mounting to the contrary daily to that standard being upheld.
We must be the irresistable force against that immovable object because our futures and the future generations are relying on our strength.

Phew. Sorry, I get a little worked up sometimes (all the time, ha) . Nice letter.

Runswithscissors

[tcmgpt13]

Great letter Emily. Just wish that it would move mountains for us. Right now. Good job! It has to be part of the drop of water on the rock. The one drop of water doesn't do that much all by itself, but over time the many continuous and steady drops wear it down. Thanks for having the courage to write this, especially at a time in which you have no support from family. This disease is all just such a terrible waste of good people, but it breaks my heart to hear that someone so young, who has her whole life ahead of her, has been so callously abandoned. I am glad to hear you have stayed strong in spite of it all.

best,

tcm

[Bad_Boy]

This is only a second to replies already made here. Such a callous, knee jerk response on the side of the bureaucratic entity and an eloquent, strait forward, and educating reply on your part. All public relations personnel should take a course in sensitive form letter writing. As ugly as it may be for an official to be unable to find the time to answer all responses immediately (yes, someone should eventually answer the correspondence personally), at least the letter writer doesn't have to receive pointless advice from someone who cannot possibly fathom the problems the letter writer faces. Thanks for sharing, Em.

BB

[emilyawhite]

thanks for the compliments...i can't wait to spend my life making noise about the healthcare crisis in our country. Not going back to law school with this altered brain of mine, but I do believe I can make an excellent case and join a few defendant practitioners who clearly dropped the ball...not going after all the docs I saw, but will fiercly pursue those who told me it was a mental thing, an anxiety/depression thing, an obsessive picking thing...lol. I am almost positive that even with my damaged brain I can make a pretty airtight case of negligence/malpractice...there's so much research on lyme, CT is a HIGHLY endemic area...and lyme disease testing (as well as docs doing their homework in an endemic area at a minimum) should be done routinely on all residents...and Quest just does not cut it in terms of false positives. If I sat on a jury and objectively saw both sides, I'd feel bad for me (not in a pity way am I saying this), and I'd think the way CT docs failed to diagnose the lyme facet of my illness is negligence--either negligent or downright stupidity. Even the person who graduated last in their class is called Doctor; but i'm not so sure rank and brains even matters, I think all it takes to be a good doc is to (a) listen to the patient objectively, (b) know up-to-date research regarding lyme or any other disease that is spreading rapidly in a highly endemic area (regardless of what disease it even is...if it's an endemic area, it's their responsibility), (c) know how reliable the testing is for obvious culprits of symptoms.

If caseloads are too high for most doctors, then the bar needs to be lowered to get into medical school; less years of medical school (i wouldn't study for that long nevermind the money); more docs entering the healthcare profession and probably more who work out of compassion than competition/money/status etc. Lesson the caseloads, more time for docs to do their homework (should be mandatory one stream of information forwarded to all docs...not sure how that could ever happen but you see what i'm trying to say i think), and of course, more time to spend taking a thorough history and conducting a thorough examination on patients. Simple, yet nonexistant.

i'm going to file malpractice suits; and you know what, in college I majored in political science and defended (stood up in class even) our healthcare system etc. (hardline conservative) and didn't believe in malpractice suits because "increases insurance premiums" --but I'll tell you, this journey has not only proved how flawed healthcare in the US is, but also how necessary malpractice law suits are in terms of shaping the behavior of docs who don't thoroughly examine and listen to the patient--if they aren't using their hearts and compassionate capacity to help patients like us, then we must force them to be thorough out of FEAR. I won't let the doctors who pushed me around like I was a head case do this to any more suffering people (no matter the condition).

Sorry for the length (I get pretty heated on this topic too!).

em

[Kritters]

Em,

" Not going back to law school with this altered brain of mine, but................ "

Ahem.

All evidence to the contrary. Would you please read what you have written and realize we need more people like you to pass the bar and work on our behalf?

If this is what you're like on Morg, I doubt any one person graduating law school could improve upon it.

Go for it, girl.

xo
Kritts

[Brenda]

...........well spoken, Em. i'm glad, real glad, you're on our side. some of us(me ) don't even know where to start, loss of vocabulary due to brain "fog", and we need young people like you to verbalize what we feel but don't have the words for. thanks for sharin'. it felt safe.

brenda

[megluth72]

I agree with Kritts. You are far more educated and clear minded than many of the politicians and lawyers I work with every day. Please, go back to school. Don't waste your talents on this disease. You're a fighter, keep kicking that butt.

You're letter was beyond excellently written. I'm sure it threw the CDC for a loop having something so eliquently put, but to the point. It will help in the long run.

Stay strong and keep those dreams. We all need people like you out there to make this world better for our kids.