This piece is really powerful. The "wrong" name can cause huge amounts of damage (dismissing of debilitating diseases, lack of funding for research, increased difficulties for patients seeking community). The layers of stigma associated with certain disease labels are so distressing and take so much work to remove :( I am encouraged that now polyendocrine metabolic ovarian syndrome is the official name and hope that other areas of medicine (rheumatology first and foremost) can follow suit!
Agreed, the "seronegative" label is especially misleading because it implies that patients aren't producing any autoantibodies when in actuality they're just not producing the ones that we most commonly look for. My clinical presentation strongly points to Sjogren's in terms of having dry eye disease, corneal damage, xerostomia, distal RTA, kidney stones, and osteoporosis. I'm negative for anti-SSA and anti-SSB antibodies but strongly positive for T cell autoantibodies. I'm still stuck with a diagnosis of UCTD, and I bet I'm not the only one.
That is beyond frustrating and I'm so sorry you are dealing with this. When a diagnosis is just out of reach it can be that much harder to try treatments (both get them prescribed and have insurance pay). I don't know much about Sjogren's but was searching just now and thought that it was very telling that the Sjogren's foundation literally has a blog post that starts "Sjogren's is difficult to diagnose!" And it shouldn't be this way, with so much of the burden on patients to hunt for a diagnosis out of a complex set of symptoms and then try to find a provider who has time to walk through the same thought process...I hope so much for more testing one day (and closer collaboration with pathology). I was inspired by your article and now want to read more about polyendocrine metabolic ovarian syndrome to learn more about their approach to testing and diagnosis.
Yes, around 40% of patients with Sjogren’s are seronegative, yet knowledge of this fact seems limited among rheumatologists. I had to beg for a nephrology referral for years, and the first one I saw confirmed that I did indeed have distal RTA. Imagine what’s happening to patients who don’t have the ability or knowledge to advocate for themselves. So many of us are quite literally left alone to die.
I am so glad that you were able to fight for that referral. It is very scary and I also worry about the number of patients who have other diseases (like cancer, presenting in some paraneoplastic way) who have diagnostic delays because of the difficulty confirming or denying most autoimmune diseases. There's a lot of work to be done.
As an academic biologist, I’ve taught more premed students than I can number and am still in touch with several who’re now practicing MDs. It is the rare premed student, and is the rare MD, who’s interested in the biological science underlying pathophysiology. Getting paid for self-service puzzle solving motivates most future MDs. Careerism drives too many MDs. I’m old enough, Nita, to recall the name GRID for AIDS — talk about layering ignorant, destructive prejudices onto the name of a terrible illness! I’m new to your site and appreciate your intelligent take on medicine. I’ll likely comment often.
Thank you for educating so many generations of medical doctors. It seems like our current system stifles curiosity at every turn, and I’m not indifferent to the moral injury many practitioners face. GRID was indeed an abomination of a name. Glad to be acquainted Dr. Persell, I look forward to learning more from your insights and experiences. Thanks again for the support!
You may know of the time when collegiate/medical education was compressed into 6 intense years, churning out MDs as if they were people getting groomed for lawn care. Parallel to that pedagogical hustle are cries about the decline of the humanities. Six-year programs are mostly gone now, but 7-year programs have become common in the US. The “selling” point is, no surprise, cost and efficiency. So it’s the rare graduate who, for example, has much understanding of the relationship between evolution and antibiotic resistance, the intestinal microbiome and behavior, or the abysmal approach to pandemic threats. Nuances of language, individual variation, gendered biology, or social influences on health are simply not part of a physician’s “training” even though most MD candidates are certainly intelligent. Alas, the disconnect between their mental capacity and assembly-line training is a major reason for MD burnout and self-destructive behavior.
Thank you for digging so deeply into this key diagnostic issue: how a poorly chosen disease name based on inaccurate and outdated assumptions harms patients by delaying diagnosis, making ineffective treatments sticky, minimizing complex disease pathways, putting the blame on the patient and discouraging research dollars. And I believe it's not just a coincidence that most of these conditions impact women more than men. Excellent article! I will be sharing this and saving it for future use.
Thanks so much, I'm glad the message resonated. I agree that misogyny in medicine is still alive and well. Blaming patients is built into medical school curricula. Many professors directly state that if you run into a patient who has collected a long list of symptoms and seen many specialists to no avail, then you should run because that patient is clearly a hypochondriac. The dismissal is one of many symptoms of a system that trades deep pathobiology knowledge in favor of a "diagnose and drug" paradigm.
Yes. Clinicians, researchers and Patient Advocates all working in the diagnostic quality space, talk a great deal about how certain cognitive biases are sticky. For example, anchoring bias is common. Black patients in the middle of a sickle cell crisis, which is extraordinarily painful, are labeled as drug seeking. Obese patients are never properly heard because the presumption is that their weight is the cause of all of their complaints. Same goes for anyone who has a mental health note in their EMR. You mentioned a great example: language in the EMR that states "patient denies alcohol use" doesn't outright presume the patient is lying. It just doesn't trust the patient's report. A patient who returns to report that a treatment didn't work or their condition has gotten worse is labeled as "difficult." in so many towns and cities in the US, there is only one major hospital/healthcare system so any negative report from any doctor at one of their building sites will follow a patient around. There is much to fix.
Yes to all of this! Anchoring bias and diagnosis momentum can be extraordinarily harmful. My life is a living testament to that. Instead of updating priors when new lab results or imaging studies become available, many clinicians stubbornly cling to their original diagnosis because they don’t want to admit being wrong. Caring for people at their most vulnerable requires one to check their ego at the door. Unfortunately, the godlike ethos surrounding clinicians is difficult to escape, and many feel the need to act the part. To err is human, to deny wrongdoing is clinician. As you mention, Black and Hispanic patients, especially those who don’t speak English, are especially vulnerable to harm and dismissal. For all the training around diseases, very little seems centered on how to actually listen and talk to patients.
Thank you for using the name myalgic encephalomyelitis and not ME/CFS.
The name really does impact understanding.
Going one step further, I think we need to acknowledge that different labels have different definitions. When one label has multiple meanings it makes it much easier to gaslight patients. It also impedes research when someone who doesn't have what I have, but has the same label, is used in research.
Drs assume that research applies to ME (me) when it doesn't... (PACE trial, NIH's effort preference, etc). Good advocacy acknowledge this reality.
Exactly! Grouping together patients with PEM with those who have fatigue due to other reasons is like grouping together patients with pneumonia and patients with COPD because they both have a cough. Conflating patient groups like that muddies the waters and makes it impossible to properly characterize and treat M.E.
Reminds me of the term "benign," as in "benign paroxysmal positional vertigo." There's nothing benign about having the world spin about you as if you're severely drunk, even though you're sober. Whoever named this disorder clearly had never experienced it!
Yes, BPPV is absolutely diabolical as a name. Even if it's not "progressive," it's still incredibly disabling and makes it difficult to lead a normal life. The effects on quality of life are anything but benign!
I learned a great deal from this posting, Nita, as usual. Thank you for your work and knowledge. You are not only educating me but also my granddaughters.
It hurts to read this article in so many levels. I am sorry for every single time someone dissmissed your symptoms. I am really sorry. You are a fantastic writer.
I think the same should be done for Alzheimer's and most neurodegenerative diseases, because the diagnoses are not accurate. The biomarkers of Alzheimer's and Parkinson's are not specific to any etiology for example, and therefore, the diagnoses are more syndromes than diseases. The plaques and tangles of Alzheimer's for example can be caused by bacterial infection, toxin exposure, diabetes, or nutritional deficiency. I think we should eventually start diagnosing based on etiology rather than mere biomarkers. For example, if a bacterial infection is the cause, the final diagnosis will be "bacterial encephalitis."
Give it a name and it is soon flavour of the month. Alzheimers for instance. What did they all suffer from before and do half of them actually have it?
It might appear that naming something triggers a bandwagon effect, but this is the result of patients that were formerly on the outside finally finding a diagnosis that fits. Some may indeed be dealing with different problems, but increased numbers of people identifying with a named disease isn’t necessarily hypochondria. Often it’s validation that their symptoms have a cause. As for Alzheimer’s, a number of conditions should be included in the differential diagnosis including B12 deficiency, hypothyroidism, delirium, Lewy body dementia, and vascular dementias.
You seem to have missed my point or as usual I have been unable to express myself clearly enough. I am in no way suggesting that the patients are hypochondriacs quite the opposite. Once a name is given to something the medics jump on the bandwagon and suddenly everyone has it. Could be that the journalists are to blame. I know what it is. I well remember my Aunt Elsie with whom I lived for the best part of 12 months squinting at me and saying , " I know you don't I?"
True, the availability heuristic and diagnostic overreach are real phenomena. I think the latter happens more often with diagnoses of exclusion or those defined by a set of symptoms rather than objective findings. Hope your aunt is doing as well as possible.
This piece is really powerful. The "wrong" name can cause huge amounts of damage (dismissing of debilitating diseases, lack of funding for research, increased difficulties for patients seeking community). The layers of stigma associated with certain disease labels are so distressing and take so much work to remove :( I am encouraged that now polyendocrine metabolic ovarian syndrome is the official name and hope that other areas of medicine (rheumatology first and foremost) can follow suit!
Agreed, the "seronegative" label is especially misleading because it implies that patients aren't producing any autoantibodies when in actuality they're just not producing the ones that we most commonly look for. My clinical presentation strongly points to Sjogren's in terms of having dry eye disease, corneal damage, xerostomia, distal RTA, kidney stones, and osteoporosis. I'm negative for anti-SSA and anti-SSB antibodies but strongly positive for T cell autoantibodies. I'm still stuck with a diagnosis of UCTD, and I bet I'm not the only one.
That is beyond frustrating and I'm so sorry you are dealing with this. When a diagnosis is just out of reach it can be that much harder to try treatments (both get them prescribed and have insurance pay). I don't know much about Sjogren's but was searching just now and thought that it was very telling that the Sjogren's foundation literally has a blog post that starts "Sjogren's is difficult to diagnose!" And it shouldn't be this way, with so much of the burden on patients to hunt for a diagnosis out of a complex set of symptoms and then try to find a provider who has time to walk through the same thought process...I hope so much for more testing one day (and closer collaboration with pathology). I was inspired by your article and now want to read more about polyendocrine metabolic ovarian syndrome to learn more about their approach to testing and diagnosis.
Yes, around 40% of patients with Sjogren’s are seronegative, yet knowledge of this fact seems limited among rheumatologists. I had to beg for a nephrology referral for years, and the first one I saw confirmed that I did indeed have distal RTA. Imagine what’s happening to patients who don’t have the ability or knowledge to advocate for themselves. So many of us are quite literally left alone to die.
I am so glad that you were able to fight for that referral. It is very scary and I also worry about the number of patients who have other diseases (like cancer, presenting in some paraneoplastic way) who have diagnostic delays because of the difficulty confirming or denying most autoimmune diseases. There's a lot of work to be done.
As an academic biologist, I’ve taught more premed students than I can number and am still in touch with several who’re now practicing MDs. It is the rare premed student, and is the rare MD, who’s interested in the biological science underlying pathophysiology. Getting paid for self-service puzzle solving motivates most future MDs. Careerism drives too many MDs. I’m old enough, Nita, to recall the name GRID for AIDS — talk about layering ignorant, destructive prejudices onto the name of a terrible illness! I’m new to your site and appreciate your intelligent take on medicine. I’ll likely comment often.
Thank you for educating so many generations of medical doctors. It seems like our current system stifles curiosity at every turn, and I’m not indifferent to the moral injury many practitioners face. GRID was indeed an abomination of a name. Glad to be acquainted Dr. Persell, I look forward to learning more from your insights and experiences. Thanks again for the support!
You may know of the time when collegiate/medical education was compressed into 6 intense years, churning out MDs as if they were people getting groomed for lawn care. Parallel to that pedagogical hustle are cries about the decline of the humanities. Six-year programs are mostly gone now, but 7-year programs have become common in the US. The “selling” point is, no surprise, cost and efficiency. So it’s the rare graduate who, for example, has much understanding of the relationship between evolution and antibiotic resistance, the intestinal microbiome and behavior, or the abysmal approach to pandemic threats. Nuances of language, individual variation, gendered biology, or social influences on health are simply not part of a physician’s “training” even though most MD candidates are certainly intelligent. Alas, the disconnect between their mental capacity and assembly-line training is a major reason for MD burnout and self-destructive behavior.
Thank you for digging so deeply into this key diagnostic issue: how a poorly chosen disease name based on inaccurate and outdated assumptions harms patients by delaying diagnosis, making ineffective treatments sticky, minimizing complex disease pathways, putting the blame on the patient and discouraging research dollars. And I believe it's not just a coincidence that most of these conditions impact women more than men. Excellent article! I will be sharing this and saving it for future use.
Thanks so much, I'm glad the message resonated. I agree that misogyny in medicine is still alive and well. Blaming patients is built into medical school curricula. Many professors directly state that if you run into a patient who has collected a long list of symptoms and seen many specialists to no avail, then you should run because that patient is clearly a hypochondriac. The dismissal is one of many symptoms of a system that trades deep pathobiology knowledge in favor of a "diagnose and drug" paradigm.
Yes. Clinicians, researchers and Patient Advocates all working in the diagnostic quality space, talk a great deal about how certain cognitive biases are sticky. For example, anchoring bias is common. Black patients in the middle of a sickle cell crisis, which is extraordinarily painful, are labeled as drug seeking. Obese patients are never properly heard because the presumption is that their weight is the cause of all of their complaints. Same goes for anyone who has a mental health note in their EMR. You mentioned a great example: language in the EMR that states "patient denies alcohol use" doesn't outright presume the patient is lying. It just doesn't trust the patient's report. A patient who returns to report that a treatment didn't work or their condition has gotten worse is labeled as "difficult." in so many towns and cities in the US, there is only one major hospital/healthcare system so any negative report from any doctor at one of their building sites will follow a patient around. There is much to fix.
Yes to all of this! Anchoring bias and diagnosis momentum can be extraordinarily harmful. My life is a living testament to that. Instead of updating priors when new lab results or imaging studies become available, many clinicians stubbornly cling to their original diagnosis because they don’t want to admit being wrong. Caring for people at their most vulnerable requires one to check their ego at the door. Unfortunately, the godlike ethos surrounding clinicians is difficult to escape, and many feel the need to act the part. To err is human, to deny wrongdoing is clinician. As you mention, Black and Hispanic patients, especially those who don’t speak English, are especially vulnerable to harm and dismissal. For all the training around diseases, very little seems centered on how to actually listen and talk to patients.
A great article, thanks for the effort you put toward it.
Thanks! It’s been difficult to write in my condition lately, so that means a lot to me.
I totally understand that. There is a lot of cognitive energy involved in writing - but especially writing researched topics.
Thank you for using the name myalgic encephalomyelitis and not ME/CFS.
The name really does impact understanding.
Going one step further, I think we need to acknowledge that different labels have different definitions. When one label has multiple meanings it makes it much easier to gaslight patients. It also impedes research when someone who doesn't have what I have, but has the same label, is used in research.
Drs assume that research applies to ME (me) when it doesn't... (PACE trial, NIH's effort preference, etc). Good advocacy acknowledge this reality.
Exactly! Grouping together patients with PEM with those who have fatigue due to other reasons is like grouping together patients with pneumonia and patients with COPD because they both have a cough. Conflating patient groups like that muddies the waters and makes it impossible to properly characterize and treat M.E.
Reminds me of the term "benign," as in "benign paroxysmal positional vertigo." There's nothing benign about having the world spin about you as if you're severely drunk, even though you're sober. Whoever named this disorder clearly had never experienced it!
Yes, BPPV is absolutely diabolical as a name. Even if it's not "progressive," it's still incredibly disabling and makes it difficult to lead a normal life. The effects on quality of life are anything but benign!
I learned a great deal from this posting, Nita, as usual. Thank you for your work and knowledge. You are not only educating me but also my granddaughters.
Thanks Tom, I hope these musings help in some small way, so that means a lot. Wishing your family health and happiness as always.
Thanks, Nita.
It hurts to read this article in so many levels. I am sorry for every single time someone dissmissed your symptoms. I am really sorry. You are a fantastic writer.
I think the same should be done for Alzheimer's and most neurodegenerative diseases, because the diagnoses are not accurate. The biomarkers of Alzheimer's and Parkinson's are not specific to any etiology for example, and therefore, the diagnoses are more syndromes than diseases. The plaques and tangles of Alzheimer's for example can be caused by bacterial infection, toxin exposure, diabetes, or nutritional deficiency. I think we should eventually start diagnosing based on etiology rather than mere biomarkers. For example, if a bacterial infection is the cause, the final diagnosis will be "bacterial encephalitis."
Give it a name and it is soon flavour of the month. Alzheimers for instance. What did they all suffer from before and do half of them actually have it?
It might appear that naming something triggers a bandwagon effect, but this is the result of patients that were formerly on the outside finally finding a diagnosis that fits. Some may indeed be dealing with different problems, but increased numbers of people identifying with a named disease isn’t necessarily hypochondria. Often it’s validation that their symptoms have a cause. As for Alzheimer’s, a number of conditions should be included in the differential diagnosis including B12 deficiency, hypothyroidism, delirium, Lewy body dementia, and vascular dementias.
You seem to have missed my point or as usual I have been unable to express myself clearly enough. I am in no way suggesting that the patients are hypochondriacs quite the opposite. Once a name is given to something the medics jump on the bandwagon and suddenly everyone has it. Could be that the journalists are to blame. I know what it is. I well remember my Aunt Elsie with whom I lived for the best part of 12 months squinting at me and saying , " I know you don't I?"
True, the availability heuristic and diagnostic overreach are real phenomena. I think the latter happens more often with diagnoses of exclusion or those defined by a set of symptoms rather than objective findings. Hope your aunt is doing as well as possible.