Although CSRF asks its members to pay for full membership, presentations with full audio from this day have been uploaded for free perusal by anyone, which is commendable. While going through talk 8, Cushing's and the Quality of Life, I was dismayed to find the following phrase in slide 6:
I find this OFFENSIVE and INSENSITIVE.
No one WANTS any disease. No one wants breast cancer. No one wants MS. No one wants a cold. What those who are still undiagnosed want is someone to test them sincerely and figure out what is wrong! That's all I wanted for 25+ years.
Can you imagine someone giving a similar presentation to a room full of breast cancer survivors/patients and saying, "of course, there are some people who WANT TO HAVE BREAST CANCER"?
Corcept Therapeutics, whose primary business seems to be the development of mifepristone as a possible treatment for Cushing's, ought to know better than to underwrite something like this. CSRF should know better than to support it.
Someone owes me and thousands of other Cushing's sufferers (diagnosed and undiagnosed) an apology. I am offended.
UPDATE: An apology from Corcept Therapeutics was sent to an offended (former due to BLA like me) Cushing's patient who pointed it out to them:
Thank you for your feedback on the presentation. We were not aware of the comments that you relayed, but they certainly do not represent the views or position of Corcept and our employees. We will carefully consider this issue as it relates to future Cushing's Syndrome Research Foundation (CSRF) or other events which Corcept sponsors.
Best regards,
Caroline
Caroline M. Loewy
Chief Financial Officer
Corcept Therapeutics
149 Commonwealth Drive
Menlo Park, CA 94025
Who in hockeysticks gave that presentation? That's the person who should be contacted, interrogated, what have you.
ReplyDeleteHave you talked to anyone who was there? I'm wondering if the speech said "Some patients [who end up having something else] want this dx..."
Of course I don't know a thing about it - just looking at this screen grab and thinking...
Dave, Dr. Mary L. Vance at UVA gave it. The speech is there at the same link (has audio) and can be heard along with the video. She said it just like that, plus some. It was/is offensive.
ReplyDeleteShe has basically said the same thing elsewhere.
ReplyDeleteA topic not addressed is that many patients who are
obese, depressed, hypertensive, or diabetic have “researched”
the Internet and are convinced they have CS.
Neurosurg Focus 23 (3):E4a, 2007
She told me that I didn't have cushings. I have the pathology report to prove I did.
UHM, yeah.
ReplyDeleteSlide two is almost worse - "No blood or urine tests to establish diagnosis Harvey Cushing had it easy"
I take it it's tough for a doctor to order all those tests. No thought to the poor people that actually had Cushing's.
I read an article, by the same doctor, published in the CSRF newsletter. She wrote in the first person and expressed dismay that many patients cry (and not with relief) when she tells them they do not have Cushing's Disease. I have long wanted to write to her directly. I have not, because I feel my words would fall on deaf years. Those tears are frustration at being dismissed, with no suggestion of another possible diagnosis... unless you're willing to accept an insinuation of malingering or insanity.
ReplyDeleteWhen I first went to an endocrinologist convinced I had hypothyroid issues she asked me, "Has anyone ever tested you for Cushing's?" My immediate response was "No. And I don't want to have that!" I would never wish what I have been through over the last 7+ years of my life on ANYONE... but I must admit I have prayed that Dr. Vance, and those who share her opinion, have their eyes opened to the torment of living with a chronic debilitating illness that has no explanation.
I think we should receive an apology from CRSF and the doctor, and that the doctor should step down from the list of medical advisors for this group.
ReplyDeleteposted to the Virginia Governor's website:
ReplyDeleteI am someone who has had Cushings' disease. One of the so-called experts in the field is Mary Lee Vance and she is employed by the University of Virginia. I say"so-called" because she seems to make her career one of insulting cushing's patients, rather than helping them. In a recent presentation at patient days for the CSRF organization, she said that cushing's patients wanted the disease -- a disease that can be fatal. http://survivethejourney.blogspot.com/ Obviously, patients find this to be a disturbing, if nor plainly insulting, attitude. It is one she has published previously.
Her iconoclastic views make it impossible for a Virginia resident to get treatment in Virginia. I personally have logged thousands of miles to get treatment that should have been available locally.
In this era of tight government budgets, I don't see why my tax dollars should be used to make my life more difficult. Please assure me that any such future outbursts by Dr. Vance be made during her personal time, at private expense, and not using the name of the University of Virginia.
Words can not express what I think of this...so called doctor. We just want answers when we are sick. Anyone that goes to you, is putting themselves in the hands of a fraud as a Cushing's Specialist.
ReplyDeleteWow.
ReplyDeleteAll I know about Cushing's is what you've told me, Robin. This appears to be one of the ignorant doctors whose patients later get effective treatment (elsewhere) for this disease they supposedly didn't have. Yes?
Apologies for not reading closely enough to see that the audio was there. My bad.
This still burns me. I read it last night and have been fuming since.
ReplyDeleteDid I also want to have my cancer? My arthritis that plagues me every day?
Although I am one of the "lucky ones" who was "cured" 27 years ago, Cushing's still affects me each and every day.
Why in the world would I want to still deal with hirsuteness, weight issues, daily meds, super-fatigue and more? Some cure!
I did take my personal knowledge and used it for some good. Many doctors don't know about Cushing's or forgot about it after their very brief introduction in med school. Yet one who professes to be an expert in Cushing's uses her learned knowledge to insult and hurt patients.
A related section from the Hippocratic Oath has been translated as:
I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.
We have so knowledgeable Cushing's doctors. It's too bad some are clueless about patient feelings.
Oh heavens, I would only expect to hear that kind of kindheartedness towards Cushing's from her [good ol' Mary Lee Vance]. Good grief.
ReplyDeleteI guess my 8 year old self just WANTED to have their childhood taken away when bot myself and my MOTHER had this dreadful and terrible disease that killed her and is killing me. I say we need to sign a petition to have that doctor's license revoked. The true justice would be for her to live like we have had to, traveling all over, just to get treatment years after first onset. Having her as your doctor should be classified as crewl and unusual. And Im afraid she is not alone. Dr. A here in Dallas is the very same. Thats why I had to go outside the state. And I feel lucky! I just hope, just PRAY I can get an interview with her for my documentry. Just to show the public how we are treated!
ReplyDeletePlease, somebody, to help us outsiders understand, can you link me to stories where this doctor said no, and a later dx proved her wrong? Or similar stories from other docs?
ReplyDeleteAs Robin surely knows, I'm not in the least questioning this. To the contrary, I'm asking for help in spreading the word. New listeners need to start from ground zero.
--Dave
Before my Cushing's came on-- when I was 22, fit, healthy, happy and loving life-- did I think myself: "Gee, I sure hope I gain 50lbs over the next few months, develop large purple stretchmarks all over my body, crushing fatigue, diarrhea, insomnia; oooh and how about some high blood pressure and tachycardia for good measure?" No! Of course not! But since that's exactly what did happen, well, then I did want answers-- a diagnosis, treatment plan and a cure. Years down the road, when my symptoms progressed to the point that I was miserably ill and I finally took to the Internet to figure out what was wrong, I learned about Cushing's and was thrilled. The symptoms fit perfectly, I already had lab data to support it and I was near certain that it was the explanation for my health issues. I would never, however, phrase it as "I wanted to have Cushing's" because, of course, I didn't want a horrible and debilitating disease! BUT I already had one and I did want proper diagnosis and treatment. Dr. Vance's comments are ridiculously insensitive. I've read her writing before and it was just more of the same patronizing insensitivity. I have very little doubt that she would have missed my diagnoses and I would have been one of the ladies crying in her office.
ReplyDeleteI'm trying hard to absorb this - I went and listened to the presentation, and I didn't hear what constitutes "proven Cushing's." It sounds to me like she meant, right or wrong, "many patients want to BE TOLD THEY have Cushing's," which is not at all what the slide said.
ReplyDeleteCould someone explain how a definitive diagnosis is made? Is it some lab test or what?
If I correctly recall old conversations with Robin, the "gold standard" diagnostic test is in fact ineffective, because people who turn out "no" on that test will in fact later respond to Cushing's treatments.
Wow. Just wow. If she had 6een y doctor I'd 6e dead 6y now. :(
ReplyDeleteHer words only further the stereotypes held 6y doctors a6out us. Stereotypes that delay or even prevent us from getting treatment altogether. I am furious!
Dave,
ReplyDeleteI have not yet listened to the presentation, I would like to point you to this commentary written by Dr. M.L. Vance: http://www.csrf.net/page/do_i_have_cushings__a_physicians_perspective.php
The interesting thing about "proven Cushing's" is that there is continued debate as to what ultimately results in a diagnosis. A while back a consensus statement was published: http://jcem.endojournals.org/cgi/content/full/88/12/5593
But as you will see, there is quite a bit of "wiggle room" so to speak. Anecdotal reports through support groups seem to contain many people who fail to meet diagnostic criteria on many tests; yet have pathology that supports a diagnosis. Sadly the joke that the only way to find out what's wrong with you is to wait for the autopsy seems to become fact.
Many people are afraid to speak out publicly against doctors because they fear being slapped with a lawsuit. Unfortunately, endocrinology is rife with doctors who are simply bad scientists. A good scientist must be willing to abandon a belief system when there is evidence that what was thought to be fact is no longer valid. History has shown us over and over again that those who are willing to reach beyond the box will be viciously attacked by those who like the box the way it is.
I could easily write a book about this... one of the greatest hurdles is that endocrinology has become a discipline that relies 100% on lab values for diagnosing problems with hormones. The flaw in this is that we KNOW that the levels of most hormones can be labile. Doctors often fail to take symptoms into account if the lab work or imaging do not meet what they think is required for diagnosis.
Some people have significantly elevated cortisol values that were completely disregarded by doctors. One vocal person who experienced this is Sharmyn McGraw. She has a website which you can find via google.
As this is a subject that I have been so personally affected by, and is so multifaceted in its complexity, I find it hard to speak briefly. I have sent you a personal e-mail, I would be more than willing to discuss this at length with you.
thank you very much for sharing this, I am out of the loop where I am so sick and unable to care for myself at all now..it inspires me, and gives me hope when I know I am not alone...sitting here with an ademona on both adrenal glands, 4 postive urine cortisols, 2 positive dex tests..pain in both kidneys, in and out of hospital with respiratory problems, and still, the doctors think I am looking for an excuse to be diagnosised with cushings.
ReplyDeleteDr. Vance told me that I did not have Cushings. She was beyond mean (and illogical) about it as well. And my tests were well within the norm for diagnosing Cushings -- well within the UVA's published reports on patients they have operated on. I had surgery and my pathology report says I had Cushings.
ReplyDeleteApparently, Dr. Hamrahian, also known for his poor record in correctly diagnosing Cushings, finds the failure to diagnose a Cushing's patient to be "humorous."
ReplyDelete"Findling's humorous, but entirely apt, concluding thought was that '...if you have never missed the diagnosis of Cushing's syndrome, or have never been humbled by trying to establish its cause, you should refer all your patients with suspected hypercortisolism to someone who has.'" I find absolutely NOTHING humorous about what Findling said. And given how many people I know who have been told to go away by both doctors, to be successfully diagnosed elsewhere with pathology proven Cushings, it seems to me to be a sad commentary on the "expertise" of supposed Cushing's experts. How long is it going to take for them to figure out there is a better way.
By the way, supported by Novartis and Pfizer too (as well as Lilly).