Medical mysteries and patient stories

Medical mysteries
(illnesses and conditions that are difficult to diagnose)
Patient stories
Medical professionals' stories
Caregiver stories
Infectious diseases

Infectious diseases
Understanding, treating, and controlling them

"Infectious diseases are caused by microscopic germs (such as bacteria or viruses) that get into the body and cause problems. Some — but not all — infectious diseases spread directly from one person to another. Infectious diseases that spread from person to person are said to be contagious."---KidsHealth (which explains how various diseases can be passed along)
General information
Ebola virus
Infectious diseases, miscellaneous
Influenza (flu)
Sepsis (on another page--the body's often deadly response to infection)
Sexually transmitted diseases (STDs)
West Nile Virus

Medical mysteries (stories about difficult-to-diagnose diseases or conditions)

Diagnosis (Lisa Sanders, MD, New York Times Magazine)
Unsolved Cases (Lisa Sanders)
Medical Mysteries (Sandra G. Boodman, Washington Post)
Think Like a Doctor
Miscellaneous stories about medical mysteries and diagnoses doctors can get wrong

5 medical conditions to treat immediately (Consumer Reports, 6-29-14) Get help fast for a stroke (treatment window: 3 hours), puncture wound (or deep cut, animal bite--treatment window: 72 hours), the flu (48 hours), Bell's palsy ( a sudden facial paralysis caused by inflammation of a facial nerve--treatment window: 72 hours), sudden deafness (treatment window: 72 hours). Read the article!

1.Diagnosis (a series of Diagnosis columns by Dr. Lisa Sanders in the New York Times magazine). Often called Think Like a Doctor . Dr. Sanders challenges readers to solve a tough medical mystery. Her book: Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis. A few of the Diagnosis columns:
---Her Allergies Were Getting Better, So Why Were Her Sinus Headaches Getting Worse? (10-31-18) Her doctors couldn’t figure out why the pain in her head was becoming excruciating. They’d need to rethink their assumptions.
---Her Various Symptoms Seemed Unrelated. Then One Doctor Put It All Together. (2-14-18) It started years earlier, the older woman told her. Almost every night, she would get these crazy fevers. First came bone-rattling, shaking chills, then suddenly she would be roasting hot, with sweat pouring off her. And her whole body would hurt, right down to her bones. Then an hour after the fever hit, she would start to feel sick and throw up until she had nothing left in her. This happened almost every night. During the day, she felt weak and tired, and her bones hurt. It made any movement painful. Nobody could figure out what the problem was, until a resident made a list of her symptoms and abnormalities, combed through her earlier electronic medical records, then searched the database PubMed to look for a disease that matched her symptoms.
---Traveling in Vietnam, His Leg Swelled Terribly. Had He Caught Something? (Sanders, Diagnosis, 9-12-18) Sometimes information and insights from Grandma can help solve a medical mystery.
---Was This a Virus, or Something More Dangerous for Her — and Her Fetus? (Sanders, Diagnosis, 11-16-17) She thought a hot bath might make her feel better, but instead she felt as iif her already-meager energy had dissolved in the warm water... She was taking acetaminophen — her obstetrician said that it was safe for her baby. ... er mother, seeing her 18-year-old daughter on the bed, not responding, was suddenly afraid. This wasn’t just a cold.
---He Thought He Had Caught His Co-Worker’s Stomach Bug. Why Were His Symptoms So Different? (Sanders, Diagnosis, 8-3-17)
For the past two years, he’d been taking a medication called etanercept for Sjogren’s syndrome, an autoimmune disorder that wreaks havoc on the glands that make tears and saliva, as well as on some of the joints. If it was a bacterial infection, they had to be careful to tailor antibiotics. He looked healthy, but the medical team read up on possibilities while testing various possibilities.
---It Began with Sudden Blackouts. Then Came Some Alarming News. (Sanders, Diagnosis, NYT, 8-7-17) And part of the diagnosis was done from afar.
---How a Joke About Flying Squirrels Led to an Ailing Woman’s Cure (Sanders, Diagnosis, NYT, 6-22-17)
---She Had Never Suffered From Anxiety. Was She Having Her First Panic Attack? (6-7-17)
---Why Were This Man’s Muscles Weak and His Body Covered With Pink Dots? (5-17-17)
---What Caused This College Student’s Stomach Pain and Vomiting? (4-27-17)
---He Was on Blood Thinners and Supplements. Could He Still Have Had a Stroke? (5-11-17)
---Why Did This Man Lose His Memory, Words and Even His Ability to Walk? (4-13-17)
---Why Did This Woman Collapse With a Rash After Her Eggs Were Harvested? (3-16-17)
---Why Did Her High Blood Pressure Turn Dangerously Low? (1-12-17)

2.Diagnosis: Unsolved Cases (Medical Mysteries) Help Dr. Lisa Sanders get to the bottom of unsolved medical mysteries. A couple of examples:
Her Face Droops Without Explanation. Can You Tell Us Why? (Lisa Sanders, MD, NY Times, 11-16-18)
He Almost Couldn’t Walk His Daughter Down the Aisle. What Is Causing His Leaden Feet? (Lisa Sanders, MD, NY Times, 10-26-18)
More here.

3.Medical Mysteries (Sandra G. Boodman, Washington Post) writes about challenging medical cases--ones that have been resolved but in which the patient's symptoms were puzzling to doctors or suggested an immediate diagnosis that would have been wrong.
The sores in her mouth were a symptom of something very serious (Sandra G. Boodman, WaPo, 4-7-17)
Born in a parking lot, the baby was fine. But something was terribly wrong with the mother. (Sandra G. Boodman, WaPo, 10-30-17) Four months after childbirth, a woman’s vaginal bleeding leads to a rare diagnosis.
She had a loud, nonstop crunching noise in her head that doctors couldn’t quiet (Sandra Boodman, WaPo, 8-18-18) It interrupted sleep, made conversation impossible and ‘literally was driving me crazy.’
She had a lot of rashes, but don’t all kids? (Sandra Boodman, WaPo, 7-28-18) A little girl’s frequent skin infections turned out to be a telltale sign of a serious problem.
Her doctor said she had the flu. It took years to find the real, and strange, illness. (Sandra Boodman, WaPo, 6-23-18) Many doctors know nothing about the disorder that made this woman so sick.
At night she suffered through searing pain, by morning it mysteriously vanished (Sandra Boodman, WaPo, 5-26-18) Two doctors blamed a kayaking injury. A scan eventually revealed something much scarier.
Why did a little girl have a persistent ‘smoker’s cough’? (Sandra Boodman, WaPo, 3-31-18) The child grew up with a terrible cough, and it took a dozen years to find out why.
She’d lost a lot of weight and had trouble swallowing. Was she dying? (Sandra Boodman, WaPo, 3-17-18) A woman was diagnosed with bad acid reflux until a family link revealed something much more unusual.
Hoping to find other patients, he revealed a cancer often mistaken for ‘jock itch’ (Sandra Boodman, WaPo, 11-25-17) The response was far beyond anything he could have imagined.
A dog bite sent him to the ER. A cascade of missteps left David, an industrial engineer, battling a catastrophic illness that kills between 60 and 80 percent of its victims. (Sandra G. Boodman, WaPo, 6-16-17) David didn’t have a regular doctor and had never gotten around to getting recommended immunizations. David’s case highlights the need of “having front-line providers be aware of these rare infections.”
She thought she’d pulled hip muscles, but six doctors couldn’t diagnose her pain (Sandra G. Boodman, WaPo, 5-15-17) Read this, if you ever danced a lot.

Why Did This Man Lose His Memory, Words and Even His Ability to Walk? (Lisa Sanders, Diagnosis, NY Times, 4-13-17) A year ago, he was fine, explained the patient’s sister. He was married, working as an auto mechanic, happy, normal. Then, six or seven months ago, he became forgetful. Little things at first — he couldn’t think of the right word, remember people’s names. The decline was too precipitous to be Alzheimer's. The patient could not make his eyes move up. When he tried to walk, his feet remained on the ground — as if there were a magnet holding them down..."The patient had already had two spinal taps as part of his work-up, and though there was some evidence of an infection, there was no sign of the most common viruses (like herpes or H.I.V.) or bacteria (like Lyme or syphilis). Nor was there any evidence of multiple sclerosis or other types of inflammatory diseases."
Why Did This Woman Collapse With a Rash After Her Eggs Were Harvested? (Lisa Sanders, Diagnosis, NY Times, 3-16-17) Testing the medications she'd taken helped solve the mystery.
Why Did Her High Blood Pressure Turn Dangerously Low? (Lisa Sanders, Diagnosis, NY Times, 1-12-17)
Why Was This 3-Year-Old So Irritable, and What Was Wrong With Her Eye? (Lisa Sanders, Diagnosis, NY Times, 2-16-17) She’d been angry and irritable, screaming and kicking at her mother over nothing. There were a couple of tiny pimples along the lower lid, near the lashes, and a couple more just next to the eye. The mother had had a cold sore on her lip earlier that month. Then the child became extremely sensitive to light. Her aunt, Amber Bard, a third-year medical student, turned to visualDx, diagnostic-support software that helps doctors make a diagnosis (in this case, mostly on skin findings) and came up with a diagnosis that the child's doctor tested for, and she was right.
A persistent headache turned out to be something ominous (Sandra G. Boodman, WaPo, 11-18-16) A thrumming headache that persisted, and turned out not to be migraine, required diagnosis by a specialist. “The ability of doctors to recognize the disorder — or to send them to a specialist who might — is crucial, Katz noted, but the disease remains unrecognized or misdiagnosed. 'If you see a really bad case of optic neuritis,' Katz said, 'especially in a minority patient, it’s important to do an NMO test. Now, if you can diagnose it, you can save their vision, save their spinal cord and save their lives.'"
A man’s persistent headache proves hard to diagnose and harder to treat (Sandra G. Boodman, WaPo, 3-19-12)
Five simple steps to avoid becoming a medical mystery (Sandra G. Boodman, WaPo, 12-2-16) "While diagnosis might seem straightforward, the process can be surprisingly complex, strewn with cognitive land mines, logistical roadblocks and red herrings. These complexities — and wrong turns — helped create the medical mysteries I’ve profiled in a monthly column for the past decade. Their examples highlight some of the steps readers can take to avoid becoming a mystery."
Medical Mystery: Why was toddler left paralyzed by routine injection? ((Mark E. Bruley,, Philadelphia Enquirer, 9-15-17) And why toddlers and small children should not be given injections in the buttock. Bruley is a biomedical engineer and VP for accident and forensic investigation at ECRI Institute in Plymouth.
Medical Mystery: An unexpected outcome from liposuction (Mark E. Bruley,, Philadelphia Enquirer, 6-23-17) When does technology help and when does it become part of the problem?
Medical Mystery: What made the night-shift nurses so sick? (Mark E. Bruley, Philadelphia Inquirer, 3-5-17)
Crystal Hefner Shares The Health Problems Breast Implants Can Pose (Bruce Y. Lee, Forbes, 7-24-16) She was diagnosed with Lyme disease and toxic mold, but realized that her symptoms matched those mentioned on a breast implant illness website and Facebook groupwith almost 3,000 members, she realized that her symptoms matched.
Odd teeth: A mother’s Internet sleuthing led to her daughter’s troubling diagnosis (Sandra G. Boodman, WaPo, 2-8-16) One of the themes in this and other of these medical mystery stories is that when the first doctor wasn't answering her questions, she went to another doctor, who listened to her and sought the right kind of help.
A simple test proved that a teen with stomach pain wasn’t a hypochondriac after all(Sandra G. Boodman, WaPo, 12-21-15) She'd had stomach pains all her life, but in college things got worse. Advice from a friend and a simple lab test led to a diagnosis and a way to eliminate the source of the pain.
He beat leukemia. But then, mysteriously, things got really bad. (Sandra G. Boodman, WaPo, 6-6-16)
For half her life, doctors told her to lose weight. But something else was going on. (Sandra Boodman, WaPo, 5-16-16)
Doctors were startled to find the cause of this 24-year-old’s excruciating pain (Sandra G. Boodman, WaPo, 4-11-16) Johanna Dickson thought her excruciating stomach pains were caused by food poisoning at first. It soon became clear the issue was more serious, but Dickson's eventual diagnosis shocked both her and her doctors.
Doctors thought he just had jock itch. Then it spread. (Sandra G. Boodman, WaPo, 10-24-16) "The experience would provide a crash course in the importance of finding experts who could provide appropriate treatment, in the necessity of learning as much as possible about a disease, and in the loneliness of coping with a diagnosis so rare it lacks a support group."
He couldn’t eat, drink or work. And doctors couldn’t explain his searing pain. (Sandra G. Boodman, WaPo, 3-14-16)
What was making her son so sick? A doctor is frustrated by the diagnostic process. (Sandra G. Boodman, Medical Mysteries, Wash Post 3-17-14) After Zachary Fox contracted the flu, his disabling stomach problems began, then grew worse.
Woman’s nonstop drenching sweats were a medical mystery (Sandra G. Boodman, Medical Mysteries, Wash Post, 10-14-13) Oddly, her palms, underarms and the soles of her feet remained dry.
Emergency surgery followed many missed chances to diagnose illness (Sandra G. Boodman, Medical Mysteries, Wash Post, 8-12-13)
What was wrong with the professor’s voice? (Sandra G. Boodman, Medical Mysteries, Wash Post, 2-23-15) The problem began with a lump in her throat. On vacation , Cutter awoke one morning feeling that something was stuck in her throat. After several weeks, her voice became increasingly raspy.
Like a slow-motion stroke (Sandra G. Boodman, Medical Mysteries, Wash Post, 4-20-15)
A Bad Diagnosis (Sandra G. Boodman, Medical Mysteries, Wash Post, 8-24-15) A prominent Baltimore neurologist explained that his angry outbursts, terrifying hallucinations and faltering balance were the result of Lewy body dementia, a relentlessly progressive, largely untreatable and ultimately fatal illness that resembles both Parkinson’s disease and Alzheimer’s. But the neurologist was wrong. To Jan De Beur, Dan’s experience underscores the potential pitfalls of a clinical diagnosis made largely on the basis of symptoms, not a concrete test that confirms or refutes a diagnosis.
Medical Mysteries: Doctors puzzled by woman’s dizziness and amplified body sounds (Sandra G. Boodman, Medical Mysteries, Wash Post, 11-24-14)
More Medical Mysteries (a page linking to many of Sandra Boodman's fascinating pieces for the Washington Post)

4.Think Like a Doctor (the excellent New York Times series--where you're asked to solve the problem and are given the answer later)
Think Like a Doctor: Ordering the Right Test (Lisa Sanders, NY Times 10-26-11)

5. Miscellaneous stories about medical mysteries and diagnoses doctors can get wrong
Boston Medical Mysteries ( Solve diagnostic puzzles with Dr. Sushrut Jangi
7 Diseases Doctors Miss (Alexis Jetter, Prevention, 2-3-15)
15 Diseases Doctors Often Get Wrong (Amanda MacMillan, Health) When mystery ailments strike: Celiac disease, fibromyalgia, and other ailments that are difficult to diagnose.
Top 10 Mysterious Diseases (LiveScience, 5-30-06)
The Mystery Diseases You Need To Watch Out For (Corrie Pikul, HuffPost, 6-18-14) It's not "nothing," it's not a cold, and you've ruled out stress, exhaustion and a crappy diet. Here are some other possibilities to consider.
Fighting a Mystery Disease (Michelle Bloomquish, WebMD Medical News, 1-1-14, on Melissa Kaplan's Chronic Neuroimmune Diseases) Many autoimmune ailments like lupus, scleroderma, and rheumatoid arthritis are often misunderstood and misdiagnosed. Where does that leave suffering women?
For Those With Mystery Illnesses, a 'Clinic of Last Resort' (Alan Mozes, HealthDay News, 10-26-11) "Researchers at the NIH's Undiagnosed Diseases Program (UDP) in Bethesda, Md., say that since the program's inception two years back, they've made considerable headway in unraveling complex medical riddles....'We're talking about patients who have gone a long, long time without any diagnosis,' noted UDP director Dr. William A. Gahl, who is also clinical director of the National Human Genome Research Institute (NHGRI). 'These are patients who have already been seen at one of the country's major health facilities — sometimes all of them — but have had no success.'"
Undiagnosed Diseases Program (National Center for Advancing Translational Sciences, NIH)
The NIH Undiagnosed Diseases Program: Insights into Rare Diseases (William Gahl and colleagues, PMC 2014 Jul 15) This report describes the NIH Undiagnosed Diseases Program (UDP), details the Program's application of genomic technology to establish diagnoses, and details the Program's success rate over its first two years.
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Patient stories

Pulse: Voices from the heart of medicine (personal accounts of illness and healing)
Cancer Survivor Stories (CancerForward)
Uncertain future of anti-pollution laws could invite rise in mercury-poisoned seafood (Kathy Jean Schultz, Center for Health Journalism, USC Annenberg, 11-4-16) A misdiagnoses and a wrong test led to years of crippling pain and loss of the ability to work for a woman in Hawaii. Finally, a new doctor tested Nancy Seagal for mercury-poisoning, which was at the root of her long-term illness. Possible source: fish containing mercury. Treatment: chelation therapy (two years worth). The loosening of anti-pollution regulations could make this kind of environmental illness more common.
What the Mystery of the Tick-Borne Meat Allergy Could Reveal (Moises Velasquez-Manoff, NY Times, 7-24-18) Meat allergy was first observed in the 1990s and formally described in 2009, which makes it a relatively recent arrival to the compendium of allergic conditions. Its most curious quality may be that it is seemingly triggered by a tick bite. Unraveling why tick bites are suddenly causing a strange reaction in some people who eat meat could help scientists better understand how all allergies work. Until meat allergy was recognized, the prevailing medical wisdom held that an allergic reaction to meat from mammals was extremely unusual.
What It's Like to Be Struck by Lightning (Charlotte Huff Mosaic, Science Alerts, 6-3-17). "Lightning is responsible for more than 4,000 deaths worldwide annually – according to those documented in reports from 26 countries.... Of every ten people hit by lightning, nine will survive to tell the tale. But they could suffer a variety of short- and long-term effects. The list is lengthy and daunting: cardiac arrest, confusion, seizures, dizziness, muscle aches, deafness, headaches, memory deficits, distractibility, personality changes and chronic pain, among others." Members of Lightning Strike & Electric Shock Survivors International meet every spring to talk about the experience.
Experts by Experience 2015 (a compilation of patients' stories, third in a series, in cooperation with Stanford Medicine). See also the compilation for 2014 and An encephalitis journey: A dozen doctors and 2.5 years
A Sense Of Self: What Happens When Your Brain Says You Don't Exist (Terry Gross interviews science journalist Anil Ananthaswamy, Fresh Air, NPR, 7-28-15). Ananthaswamy, author of : The Man Who Was Not There: Tales from the Edge of the Self, thinks a lot about "self" — not necessarily himself, but the role the brain plays in our notions of self and existence. He "examines the ways people think of themselves and how those perceptions can be distorted by brain conditions, such as Alzheimer's disease, Cotard's syndrome and body integrity identity disorder, or BIID, a psychological condition in which a patient perceives that a body part is not his own."..."
From a coma to the Olympics: Chase Kalisz’s road to Rio (Barry Svrluga, WaPo, 7-18-16) At age 8, Kalisz was diagnosed with something called Guillain-Barré syndrome, an autoimmune disorder that strikes 3,000 to 6,000 people in the United States each year. Eighty percent fully recover. In rehab he discovered the swimming pool...
How One Man’s Face Became Another Man’s Face (Steve Fishman, New York Magazine, 11-15-15) The story of a human transplant, on a man whose face had been shot off. It was the first surgery to replace, in addition to the face, the jaws, teeth, and tongue. With pre-surgery photo and post-surgery video of Patrick Hardison.
The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is (Part 1) (Errol Morris, Opinionator, NY Times, 6-20-10) Anosognosia is a neurological disorder in which a person who suffers from a disability seems unaware of or denies the existence of his or her disability. An anosognosic patient who is paralyzed simply does not know that he is paralyzed.
Patient Stories UK (using digital and broadcast media approaches to provoke debate about safety and patient experience in healthcare)
Back in the Game (world's largest forum of orthopedic and rheumatological patient stories)
Medical Mysteries (Sandra G. Boodman, Washington Post, series) Medical cases that have been resolved but in which the patient's symptoms were puzzling to doctors or suggested an immediate diagnosis that would have been wrong)
Patients' Stories (Narrative Matters, listen on iTunes)
Mystery Diagnosis (Discovery Health, videos, including A case of Paralysis
An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey
The Boy in the Plastic Bubble and other tales of NIH research (Pat McNees, for NIH)
Decompression Illness (the Bends), story by Philip Greenspun
Fighting a Rare Illness--Together (Meg Massey, Parade 2-13-09). Story of the McCurdys and the Barth Syndrome Foundation.
Continuing Education (H. Lee Kagan, Pulse, 7-27-14). A physician learns the hard way--as a flu patient--the dangers of not staying hydrated and the discomforts of the nasogastric (NG) tube.
In Sickness and in Health (Dick Gordon, The Story, American Public Media, 1-24-07) Sam's wife Beatrice died of breast cancer in 2001, and despite his professional connections, his experience almost broke him financially.
MRSA: The bug drugs can't cure (Maryn McKenna, Self, story about methicillin-resistant Staphylococcus aureus)
Personal stories of schizophrenia (WFSAD)
Memoirs of illness, crisis, disability, differentness, and survival (a reading list)
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Caregiver stories

Great caregiver stories (
Caregiver stories (Caregiving Alliance)
Caregiver and family member stories (Alzheimer's Association)
Patient and caregiver stories (M.D. Anderson Cancer Center)
Stories of Hope (California Stem Cell Agency, California Institute for Regenerative Medicine)
Letting Patients Tell Their Stories (Dhruv Khullar, Well blog, NY Times, 4-11-16) "In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing “the person behind the patient.”
"In the United States, Medicare recently began paying doctors to talk with their patients about end-of-life planning. These conversations allow patients to discuss and explore their preferences about a slew of complex medical interventions, including clinical trials, transfers to the intensive care unit, use of mechanical ventilation or feeding tubes, and the desire to die at home or in the hospital. These discussions, too, may benefit from a biographical approach, in which patients are able to elaborate on what is and has been most important in their lives. To better serve patients, we need to see not only who they are, but also who they were, and ultimately, who they hope to become even at the end of life."
Neurosurgery patient stories from UPMC Mercy (UPMC Mercy is a main hospital facility of the University of Pittsburgh Medical Center)
Schizophrenia blogs and stories (, UK)
The First Signs of Schizophrenia ( ( stories from support groups discussions)
Things I Wish I'd Known (Cancer Caregivers speak out)
Patient, Caregiver, and Staff stories (Moores Cancer Center, UCSan Diego)
Caregivers, caregiving, long-term care, and caregiver burnout (a whole separate section on this site)
Search Google using the appropriate terms "patient" "caregiver" "stories' and the terms for the condition you want to know about ("cancer" "dementia" and so on) and you will no doubt turn up LOTS of stories. Some of them will be scary, some will be helpful -- and some encouraging.
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Medical professionals' stories

Pulse (Voices from the heart of medicine). Personal accounts of illness and healing, fostering more humanistic medicine, encouraging health care advocacy)
Crash Course (Marilyn Barton, Pulse, 10-7-16) A nursing student in the psych ward learns the anxiety of not knowing what to do.
Family Summons (Amy Cowan, Pulse, 1-6-17) The benefits of summoning the family when a person may be dying: Getting the human take on the person.
With doctors losing respect, perhaps it’s time to expose medicine’s dark side (Ahmad Yousaf, Kevin MD, 5-22-16) Health care professionals deal with patients every day who offer verbal abuse and physical threats, but the doctors must keep treating them.
Bad Medicine (the dubious, bad and sometimes frankly lunatic developments in the medical world). Ben Goldacre's column from The Guardian, covering media misrepresentations of science, with a particular focus on medicine--with a forum. Listen to his TED talk, Battling Bad Science.
Best 50 Medical Technology Blogs (Forensic Science)
The Chart (Dr. Sanjay Gupta, CNN)
Correcting the AIDS Lies (AIDS dissent is largely based on misinformation and misunderstanding--collating all relevant facts so that no one need die of ignorance)
The Doctor Blog (ZocDoc)
Engaging the Patient
HealthNewsReview (excellent watchdog blog, offering perspective and opinion, by Gary Schwitzer and others). See also's Story Reviews (systematic, criteria-driven critiques of news stories and other media messages that may affect the public dialogue about health care).
Grand Rounds, a weekly summary of the best health blog posts on the Internet, available at Better Health and at
Health Care Renewal Addressing threats to health care's core values, especially those stemming from concentration and abuse of power. Advocating for accountability, integrity, transparency, honesty and ethics in leadership and governance of health care.
Health News Watchdog
KevinMD (physicians' voices)
MD Whistleblower
Med Student's t-Test (a medical/​graduate student's musings on medicine and science, with occasional rants about quackery)
Science-Based Medicine (blog exploring issues and controversies in science and medicine, including dubious medical, nutritional, and related approaches to medical diagnosis, treatment, etc.). See excellent page of links to medical blogs, medical sites, recommended sites, and skeptical and science blogs
Science-based pharmacy (turning an eye on the profession, separating fact from fiction on both sides of the counter)
Shrink Talk
Shrink Rap (for psychiatrists by psychiatrists) and now a book: Shrink Rap: Three Psychiatrists Explain Their Work by Dinah Miller, Annette Hanson, and Steven Roy Daviss. Listen to them interviewed on Talk of the Nation (NPR)
Skeptical Scalpel
Speaking of Medicine (PLOS Medical Journals' community blog)
STAT Reporting from the frontiers of health and medicine
This May Hurt a Bit (Shara Yurkiewicz, Scientific American, The intuitions, insights, and growing pains of a medical student)
Top 50 Public Health Blogs (The Science of Health blog, 1-13-10)

The Vaccine Times
Vital Signs ( blog in defense of science-based health care)
White Coat Underground (doctoring in real life)
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Infectious diseases
Understanding, treating, and controlling them

"Infectious diseases are caused by microscopic germs (such as bacteria or viruses) that get into the body and cause problems. Some — but not all — infectious diseases spread directly from one person to another. Infectious diseases that spread from person to person are said to be contagious."---KidsHealth (which explains how various diseases can be passed along)
General information
Acute flaccid myelitis (AFM)
Ebola virus
Infectious diseases, miscellaneous
Influenza (flu)
Sepsis (on another page--the body's often deadly response to infection)
Sexually transmitted diseases (STDs)
West Nile Virus

General information about infectious diseases

When towns lose newspapers, disease detectives fly blind (Helen Branswell, ScienceWriters magazine, 5-31-18) Epidemiologists rely on all kinds of data to detect the spread of disease, including reports from local and state agencies and social media. But local newspapers are critical to identifying outbreaks and forecasting their trajectories. Every county without a local newspaper is a community where health officials and disease researchers could be flying blind.
Connecting the dots between social determinants and infectious diseases (Bara Vaida, Covering Health, AHCJ, 9-27-18--a wonderful resource for medical writers and editors) "Socioeconomic factors such as poverty and living conditions play a role in shaping infection risk and disease outcomes. Many times people in poverty live in crowded conditions, have limited access to quality health care, must work when they are sick, eat less nutritiously, get less sleep, face more stress and are more likely than others to abuse drugs and alcohol. All of these factors hinder immunity and increase susceptibility to infection and death....“We look more and more like the developing world, with very, very rich people and very, very poor people, and the very, very poor people are living in really abysmal situations,” Margot Bushel, a physician and scientist at the University of California, San Francisco, told Scientific American.
American Epidemic (Melinda Wenner Moyer, Scientific American, May 2018) Resurgent outbreaks of infectious diseases are sickening thousands, and the causes are societal.
The stark disparities in how infectious diseases kill Americans (Alison Snyder, Axios, 4-5-2018)
How a Lack of Public Restrooms Helped Spread a Deadly Hepatitis Outbreak (Gillian Mohney, HealthLine, 9-21-17) A serious hepatitis A outbreak started in San Diego, which has had a surge in its unsheltered homeless population. It has now spread to Los Angeles. Hepatitis A is a viral infection that leads to inflammation of the liver. This type of viral hepatitis isn’t just spread through sexual contact or intravenous drug use, but often is related to poor hygiene. In San Diego, a lack of access to public restrooms may have exacerbated this type of outbreak.

Blogs, news, podcasts about medical, health, and science topics and issues
Discover Magazine stories about infectious diseases, microbes, and viruses A new expert guidance document for hospitals to use in preparing for and containing outbreaks was published by the Society for Healthcare Epidemiology of America, with the support of the Centers for Disease Control and Prevention. The guide was published in Infection Control and Hospital Epidemiology.
The Next Plague Is Coming. Is America Ready? (Ed Yong, The Atlantic, July/​August 2018) The epidemics of the early 21st century revealed a world unprepared, even as the risks continue to multiply. Much worse is coming. "When Ebola flared in 2014, the science-minded President Barack Obama calmly and quickly took the reins. The White House is now home to a president who is neither calm nor science-minded. We should not underestimate what that may mean if risk becomes reality."
Covering medical beats and health care (Writers and Editors site, links to many helpful resources about covering epidemics and infectious diseases as a journalist)
Evidence-based medicine (Writers and Editors site)
HealthMap (global health, local information--an Internet-based reporting system run out of Boston Children’s Hospital, Computational Epidemiology Lab)
Infection prevention outside of the acute care setting: Results from the MegaSurvey of infection preventionists. (M Pogorzelska-Maziarz and EL Kalp, American Journal of Infectious Control, 6-17) "This study indicates that resources directed to infection prevention and control (IPC) in nonacute care settings may be lacking and identifies important areas for IPC education and program improvement. Research is needed to further examine staffing and IPC resources in these settings, which represent unique challenges to infection prevention and control.
New document guides hospitals in responding to infectious disease outbreaks (Science Daily, 11-30-17)
ProMED Mail (an Internet-based reporting system focused on global dissemination of infectious disease outbreaks, International Society for Infectious Diseases)
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Infectious diseases, miscellaneous

Lack of awareness of Valley fever is the disease’s biggest danger (Tristan Ettleman, Covering Health, 4-12-18) "Doctors can misdiagnose Valley fever, a fungal disease that lurks behind common symptoms like coughs and fatigue, because many aren’t familiar with the respiratory disease, medical experts said. And that could prolong patient suffering. Misdiagnoses not only hinder Valley fever recovery, they can make it worse... In 2016, the Centers for Disease Control and Prevention received more than 11,000 reports of Valley fever, which strikes people with fatigue, coughing, fever and headaches that last weeks, even months. About 6,000 reports were from Arizona, and more than 5,000 from California. But likely tens of thousands of cases go unreported, CDC epidemiologist Orion McCotter said."
Diseases and conditions (search box, National Institute of Allergy and infectious Diseases, NIAID) Broadly covers allergic diseases, immunologic diseases, and infectious diseases. Featured diseases: food allergy, HIV/​AIDS, influenza, malaria, Respiratory Syncytial Virus (RSV), tuberculosis, and Zika virus.
Vaccines and vaccinations

Influenza (flu)

The flu: what you need to know (blog post on this site)
The Looming Threat of Avian Flu (Maryn McKenna, NY Times Magazine, 4-17-16)
In the Flu Battle, Hydration and Elevation May Be Your Best Weapons (Kate Murphy, NY Times, 1-12-18). A good explanation of how the flu works and how to deal with it. Drink a cup or so of water or other liquid every hour, and avoid alcoholic and caffeinated beverages. Over-the-counter medications that suppress your cough and dry your sinuses may not be the best idea; you want to get rid of the infection. 'Although you want to rest, lying flat all the time can be problematic because it collapses your lungs so you can’t cough as efficiently, trapping bacteria in your respiratory tract. If the virus destroys enough cells in your bronchial tubes it creates openings for bacteria to get into your lungs, which can lead to pneumonia, a potentially life-threatening complication of the flu. When your lungs are vertical rather than horizontal, “you’re able to breathe deeply and freely and you’re able to cough out any inadvertent material, even microscopic bacteria, that get down into bronchial tubes,” Dr. Schaffner said.'
Flu Trackers (a volunteer, civilian crowdsourcing effort monitoring infectious disease outbreaks worldwide)
Covering Pandemic Flu (Nieman Foundation's Guide) Links to information at many levels.
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Acute flaccid myelitis (AFM)

Acute flaccid myelitis (AFM) is a rare but serious neurologic illness of sudden onset, usually in children. It presents with localized limb weakness and visible changes on MRI. The cause is currently unknown.
Acute flaccid myelitis (AFM) in U.S. children CDC continues to receive reports of children with acute flaccid myelitis (AFM), a rare but serious condition. CDC is working hard to find the causes of these AFM cases. Symptoms include sudden weakness or a loss of muscle tone in legs and arms. Those symptoms seem to echo polio, a contagious virus that attacks the nervous system and can cause paralysis. The CDC said AFM is not believed to be caused by the poliovirus, but has been unable to pinpoint a direct cause.
How to Spot Symptoms of Acute Flaccid Myelitis in Your Child (helpful infographic, CDC)
Reported incidents of rare polio-like illness in children are increasing (Bara Vaida, Covering Health, AHCJ, 10-19-18) Research points to the condition being rare and treatable if caught early. This piece (feared to medical reporters) includes links to many other stories about the condition.
CDC resources about Acute Flaccid Myelitis (links to many pieces about the illness)
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Ebola virus

Ebola virus disease (World Health Organization fact sheet) Ebola virus disease (EVD), formerly known as Ebola haemorrhagic fever, is a severe, often fatal illness in humans. The virus is transmitted to people from wild animals and spreads in the human population through human-to-human transmission.
Ebola Hemorrhagic Fever (CDC) Spread through bodily fluids of a person who is sick with or has died from Ebola....there are few established prevention measures.
Don’t forget about Ebola survivors, researcher tells reporters (Bara Vaida, Covering Health blog, AHCJ, 7-30-18)
The Next Plague Is Coming. Is America Ready? (Ed Yong, The Atlantic, July/​August 2018) A compelling, unnerving account of the pandemics ahead. "Sub-Saharan Africa’s population will more than double during the next three decades, and urban centers will extend farther into wilderness, bringing large groups of immunologically naive people into contact with the pathogens that skulk in animal reservoirs—Lassa fever from rats, monkeypox from primates and rodents, Ebola from God-knows-what in who-knows-where."
How ‘outbreak culture’ can hinder infection control (Bara Vaida, Covering Health, AHCJ, 10-5-18) As health officials in the eastern part of the Democratic Republic of Congo race to stop the spread of Ebola, one of many factors that could hinder their efforts is a so-called “outbreak culture” — a situation described in a new book co-authored by Pardis Sabeti and health journalist Lara Salahi : Outbreak Culture: The Ebola Crisis and the Next Epidemic “Salahi and Sabeti’s book also touches on the role of the media during the outbreak in West Africa and how news stories perpetuated fear. Cable news ran nearly a thousand stories between mid-October and early November 2014 on the few Ebola cases in the U.S. The blanket coverage increased people’s fears that they were of personal risk of contracting Ebola, though the virus isn’t easily spread. That led in turn to politicians making public policy decisions that not based on science — namely the decision to quarantine humanitarian aid workers who had been helping to stop the outbreak in West Africa when they returned to the U.S. “The way the media frames an outbreak among the population has a lot to do with how they respond to the outbreak,” she said. “During some outbreaks, the scientific community is learning about the pathogen as the outbreak is unfolding,” Salahi said. “There can be a lot we don’t know. So often we as journalists look for “answers,” because the public is looking for answers. I think it is important for journalists to communicate uncertainty. We should not equate communicating uncertainty with incompetence.”
Ebola Fast Facts (and a timeline -- CNN)
Ebola virus disease (EVD) information and resources
What is Ebola Virus Disease? (CDC's coverage--click on categories on left for full details). Plus special section on 2014-2016 Ebola Outbreak in West Africa.
Storygram: Amy Maxmen’s “How the Fight Against Ebola Tested a Culture’s Traditions” ( Amanda Mascarelli, The Open Notebook, National Association of Science Writers, 10-3-17) Mascarelli annotates an award-winning story to shed light on what makes some of the best science writing so outstanding.
Everything You Need to Know about the Ebola Vaccine (Dina Fine Maron, Scientific American, 5-17-18) Public health workers are preparing to roll out inoculations even as the disease has spread to an urban location.
In covering Ebola outbreak this time, some lessons to remember (Bara Vaida, Covering Health, AHCJ, 6-7-18)
Response Is Swift to Try to Contain Congo's Ebola Outbreak Transcript. (Weekend Edition, NPR, 5-19-18) NPR's Scott Simon talks to Karsten Voigt of the International Federation of Red Cross, who just returned from 5 days in the hot zone, about the process of containing the virus. Burial in an Ebola outbreak because a dead body has a very high viral count and Red Cross volunteers come in dressed in full protective gear, treating the body with much caution. The technical team has to educate the public about the dangers of physically touching the bodies or "people will not report that somebody has died of Ebola and that they will follow the burial rites in secret."
Ebola outbreak opens way to chaotic jockeying to test experimental drugs (Helen Branswell, STAT News, 5-30-18)
Why Ebola keeps coming back (Dr Charlie Weller,Head of Vaccines, Wellcome Trust, BBC News, 5-14-18) "Ebola can spread rapidly, through contact with even small amounts of bodily fluid of those infected. Its early flu-like symptoms are not always obvious." Why tracking is so important, and an update on the vaccine.
Why Ebola is so dangerous (BBC News, 10-8-14) How Ebola virus spreads.
How the Ebola virus spreads (Michael Martinez and Jacque Wilson, CNN, 9-30-14)
The latest Ebola outbreak: What has changed in the international and U.S. response since 2014? (Josh Michaud and Jennifer Kates, KFF, 5-25-18)
Cataract Surgeries for Ebola Survivors in Liberia (Advancing Partners, 1-12-18)
The Ebola Wars (Richard Preston, New Yorker, 10-27-14) How genomics research can help contain the outbreak.
The latest Ebola outbreak: what has changed in the international and U.S. response since 2014? (Josh Michaud and Jennifer Kates, KFF, 5-25-18) In the DRC, an Ebola vaccine is being used to control an outbreak for the first time, an important and historic step forward in combatting the disease. Development of the vaccine was accelerated during the West African outbreak four years ago, recently resulting in a successful candidate. While the vaccine is still considered experimental and for use on an emergency basis only, it has been shown to be very effective and the DRC and WHO agreed to deploy it in the current response. Yet, the Administration’s recent budget moves on global disease outbreak prevention and response send mixed messages. And no senior U.S. government leader for U.S. international outbreak response has been designated.
In covering Ebola outbreak this time, some lessons to remember (Bara Vaida, Covering Health, Association of Health Care Journalists, 6-7-18) Good backgrounder for journalists (also available to regular people).
Ebola Treatment Research National Institute of Allergy and Infectious Diseases (NIAID) is advancing research on several investigational Ebola treatments in different stages of development, including ZMapp, BCX4430.
A Doctor Leading the Fight Against Ebola Has Caught the Virus (NPR, 7-23-14) The fact that health care workers are contracting Ebola could be a major setback in the fight against this outbreak — especially when the patient is as prominent as Khan. "This is a huge blow," says Beaubien. "And the fact that it is so public is just going to add to the overall fear and the sense among people there's nothing you can do to keep yourself safe." Sierra Leone Doctor Who Led The Fight Against Ebola Dies (Nicholas St. Fleur, NPR, 7-30-14) Dr. Sheik Umar Khan had been one of the top doctors battling the deadliest and largest Ebola outbreak in history.
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West Nile virus

West Nile Virus (Centers for Disease Control and Prevention)
How Much Should You Worry About West Nile Virus? (Catherine Roberts, Consumer Reports, 6-28-18) West Nile—which is transmitted to people by mosquitoes who’ve fed on birds infected with the virus—has actually been the most common mosquito-borne illness in the U.S. for a number of years. The risk of getting it is low, and is higher where there is a lot of standing water. There is no vaccine against it, so the safest way to avoid it to use an effective insect repellent (one that contains "contain 15 to 30 percent deet, 20 percent picaridin, or 30 percent oil of lemon eucalyptus").
Q&A about West Nile virus (New York Times, 8-25-12) "The outbreak of West Nile virus this year [2012]has spread to nearly every state and is shaping up to be the largest one on record since the first human cases were reported in the United States in 1999.
West Nile virus fact sheet (PDF, CDC,
Recommendations for Protecting Laboratory, Field, and Clinical Workers from West Nile Virus Exposure (download from CDC)
West Nile outbreak largest ever in U.S. (Elizabeth Cohen, CNN, 8-23-12) Five things you need to know about WNV: 1) Most mosquitoes do not carry West Nile. 2) Most people bit by West Nile mosquitoes do not get sick. 3) You can help prevent West Nile with the "four Ds." (See article for details.) 4) People over 50 are most vulnerable. 5) Seek medical care immediately if you have severe headaches or confusion.
West Nile Virus (NIH, National Institute of Allergy and Infectious Diseases)
A caregiver's sacrifice (Beth Macy's account of how Linda Rhodes copes when illness--West Nile virus--precipitates her husband’s mental decline)
In 'Monsters,' Graphic Novelist Emil Ferris Embraces The Darkness Within (Fresh Air, 3-30-17). Terry Gross interviews Ferris about how she began writing and drawing My Favorite Thing Is Monsters after she was bitten by a mosquito that infected her with West Nile virus. The virus left her paralyzed, but eventually she regained some use of her right hand and learned to draw again by duct-taping a quill pen to her hand. Looking back, she says the book never would have been written had she not contracted West Nile.
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Tuberculosis (MedlinePlus, NIH)
Tuberculosis (overview, Mayo Clinic)
Tuberculosis (World Health Organization, WHO)
Multidrug-resistant tuberculosis: What journalists need to know (Chloe Reichel, Journalist's Resource, 5-30-18) While a new Ebola outbreak makes headlines, another much more extensive epidemic is quietly spreading across the world: multidrug-resistant tuberculosis (MDR TB). Though tuberculosis is a curable disease, multidrug-resistant tuberculosis presents an especially dire threat because, as the name suggests, the most powerful TB drugs don’t work to treat it. Reichel explains the disease's prevalence, the basics of transmission and treatment options.
Drug-resistant TB: XDR-TB FAQ (WHO) Answers to frequently asked questions.

At Europe's Doorstep, Fierce War Against TB (Gautam Naik, Wall Street Journal, 12-31-12). Part of a series, possibly behind a paywall. "In Western Europe, drug-resistant strains of TB are starting to make a wider appearance. Last year, Britain reported 421 cases of drug-resistant TB, a 26% jump from the previous year. Most Western Europe cases can be traced to the TB-wracked eastern half of the continent. (In contrast, there were 124 case of drug-resistant TB in the U.S. in 2011.)"..."At least 30% of all new TB cases in Eastern Europe are now resistant to key front-line drugs. The equivalent official rate is 6% for China and 2.1% for India, though the latter is probably an underestimate. (In absolute numbers, India and China have far more multidrug-resistant cases because of their larger populations.)"
Nevada epidemiologist: Deaths of young mother, baby have put tuberculosis back on radar (Associated Press, 10-9-13). Las Vegas: "The winning battle against tuberculosis in the United States may, ironically, be part of the reason why the disease wasn’t detected in a young Las Vegas mother and her baby until it was too late, experts said."
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Useful Links

Sexually transmitted diseases (STDs)

What Are STDs? Sexually Transmitted Diseases Information
(Planned Parenthood) STDs are infections that are passed from one person to another during vaginal, anal, and oral sex. They’re really common, and lots of people who have them don’t have any symptoms. STDs can be dangerous, but the good news is that getting tested is no big deal, and most STDs are easy to treat. Information about chlamidia, genital warts, gonorrhea, hepatitis B, Herpes, HIV & AIDs, HPV (human papillomavirus), Moloscum contagiosum, public lice ("crabs"), scabies, syphilis, and Trichomoniasis ("trich").
Pictures and Facts About STDs (WebMD slideshow)
Record High Number Of STD Infections In U.S., As Prevention Funding Declines (Richard Harris, Health News from NPR, 8-28-18) Chlamydia, a bacterial infection, remained the most common sexually transmitted disease, with more than 1.7 million reported cases. But health officials are concerned that gonorrhea cases increased a startling 67 percent between 2013 and 2017, and syphilis climbed even faster — 76 percent over those four years. After many years of success in controlling sexually transmitted diseases, "We've been sliding backwards," says Dr. Gail Bolan, director of the CDC's Division of STD Prevention. She spoke at a news conference in Washington Tuesday.
Why Are STDs on the Rise If Americans Are Having Less Sex? (Ashley Fetters, The Atlantic, 8-28-18)
The U.S. Hits Record STD Numbers—And Prevention Budgets Continue to Fall (Angela Lashbrook, The Atlantic, 8-28-18) Funding cuts are one hurdle to stopping the spread of gonorrhea, syphilis, and chlamydia.
The Gonorrhea Doomsday Is Nigh (Alexander Abad-Santos, The Atlantic, 4-23-13) Gonorrhea, one of the smartest of all the bacterial STDs, is on the rise. And now, doctors who devote their careers to studying The Clap are warning that the disease could be completely untreatable soon. Luckily, those killer strains are not very common right now. But like gonorrhea, that could change if we don't make new drugs or curb our irresponsible antibiotic use — meaning, come 2015, we might be thankful if untreatable gonorrhea is our biggest problem.
The Emerging Threat of Untreatable Gonococcal Infection (Gail A. Bolan, M.D., P. Frederick Sparling, M.D., and Judith N. Wasserheit, JAMA, 2-9-12) Gonorrhea, which disproportionately affects marginalized populations, is the second most commonly reported communicable disease in the United States. Over the past 3 years, the gonococcus has shown decreased susceptibility to our last line of antimicrobial defense.
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Useful links

AARP on Medicare Basics and Related Topics
ADHD, ADD, and other problems with inconsistent (sometimes hyperfocused) attention (special section under Coping with chronic, rare, and invisible diseases and disorders
ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis), special section under Coping with chronic, rare, and invisible diseases and disorders
Alzheimer's Disease Fact Sheet (National Institute on Aging)
Alzheimer's Disease(Karen Barrow, Patients' Voices) Here how several patients experience the disease.
An Uncertain Inheritance: Writers on Caring for Family , edited by Nell Casey. Short personal essays that ring true and cover a range of experiences.
American Cancer Society (Cancer helpline: 1.800.227.2345)
American Diabetes Association (1-800-DIABETES) (800-342-2383)
American Heart Association (AHA) (1-800-242-8721)
American Parkinson Disease Association (APDA)
American Stroke Association (1-888-478-7653)
Anatomy of medical error
Arthritis Foundation (Helpline: 1-844-571-4357)b
A to Z Index (CDC, Centers for Disease Control and Prevention)

Barth syndrome (a metabolic and neuromuscular disorder, occurring almost exclusively in males, that primarily affects the heart, immune system, muscles, and growth--Genetic and Rare Diseases Information Center)
The boy in the plastic bubble and other stories of clinical research at NIH

Center for Medical Consumers (working to protect patients' rights--helping them make informed decisions). "Are all those drugs and tests you're told you need really critical to your health? The only way to answer this question is to read the published studies yourself. We do it for you each month. Our articles provide a critical evaluation of the latest medical research you’re not likely to get from your doctor."
Congenital heart defects (Parade, "Saving Tiny Hearts Is What We Have to Do" by Lisa Sweetingham)

Decompression Illness ("The Bends") by Philip Greenspun
Diabetes (a whole section on diabetes on the page about Coping with chronic, rare, and invisible diseases and disorders

Database of rare disorder organizations (NORD, National Organization for Rare Disorders)
Disaster Information Management Research Center (NIH, Improving Access to Disaster Health Information)
Diseases and Conditions, A to Z (Family Doctor)

EURORDIS-Rare Diseases Europe (The Voice of Rare Disease Patients in Europe)

Center for Medical Consumers (working to protect patients' rights--helping them make informed decisions). "Are all those drugs and tests you're told you need really critical to your health? The only way to answer this question is to read the published studies yourself. We do it for you each month. Our articles provide a critical evaluation of the latest medical research you’re not likely to get from your doctor."

Genetic Alliance, a nonprofit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders, whose network of groups includes more than 1,000 disease-specific advocacy organizations (including some focused on intersexed conditions) as well as universities, private companies, federal agencies, policy groups, and private citizens working to promote genetic research.

Get Palliative Care (care to comfort, not to cure)

Grand Rounds (online) (Dartmouth-Hitchcock Medical Center, talks and slide shows on many topics)

Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, Janice Lynch Schuster, and Joan Harrold ("sensitive and practical advice for the ambiguous final stage of a life-threatening illness--when hope for a recovery is waning and the patient and family members are turning toward a different horizon, that of accepting and supporting an imminent death. For the most part, the authors focus on physical concerns such as pain management, artificial feeding, and an especially poignant passage about assisted suicide.")

Health Boards (150 message boards on various diseases, conditions, and health topics)


Health care guidelines store (Institute for Clinical Systems Improvement --ICSI guidelines, Tier 1 and Tier 2)

HealthCentral has sites (and blogs) in these categories: Acid Reflux, ADHD, Allergy, Alzheimer's, Anxiety, Arthritis, Asthma, Bipolar, Blood Pressure,Breast Cancer,Cholesterol, Chronic Pain,Cold and Flu, COPD, Depression, Diabetes, Diabetes and Teens, Diet and Exercise, Erectile Dysfunction, Food and Nutrition, Heart Disease, Herpes, HIV/​AIDS, IBD, Incontinence, Learning Disabilities, Menopause, Migraine, Multiple Sclerosis, Obesity, Osteoporosis, Prostate, Rheumatoid Arthritis, Schizophrenia, Sexual Health, Skin Cancer, Skin Care, Sleep, Wellsphere. This looks like a good place to start finding out about a health problem.
Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources.

International Parkinson and Movement Disorder Society, Worldwide Education and Awareness for Movement Disorders, has useful information pages about ataxia, bradykinesia, chorea and choreoathetosis, corticobasal degeneration, dyskinesias (paroxysmal), dystonia, essential tremor, hereditary spastic paraplegia, Huntington's disease, multiple system atrophy, myoclonus, Parkinson's disease, progressive supranuclear palsy, restless legs syndrome, Rett syndrome, spasticity, Sydenham's chorea (St. Vitus' dance), tics, Tourette's sydrome, tremor, and Wilson disease.

Medicine and the Media.The Dartmouth Institute, in partnership with the National Institutes for Health and the Department of Veterans Affairs, teaches journalists to approach medicine as skeptically as they do politics by teaching them how to interpret and present scientific information. (This course was previously offered at NIH, and the venue keeps changing. The PDFs offered onsite may be helpful.
---TDI Numbers Glossary
---TDI Questions to Guide Reporting
---The Evidence-to-Practice Gap: Teaching Clinicians Evidence-based Medicine (two-hour video of NIH seminar, Medicine Mine the Gap series, Dr. Scott Richardson, 5-27-12) See other videos in the Medicine: Mind the Gap series, part of the NIH Webinar Series, which is part of the larger NIH Videocasting and Podcasting series (Center for Information Technology, NIH)


National Cancer Institute (NCI, 1-800-4-CANCER, OR 1-800-422-6237)
National Guideline Clearinghouse AHRQ's National Guideline Clearinghouse is a public resource for summaries of evidence-based clinical practice guidelines. See Matrix for accessing guideline summaries bases on two sets of criteria you input.
National Meningitis Association (NMA)
Neuromuscular Diseases (MDA list includes muscular dystrophies, motor neuron diseases, metabolic diseases of muscle, diseases of peripheral nerve, inflammatory myopathies, diseases of the neuromuscular junction, myopathies due to endocrine abnormalities, and other myopathies.
• NIH Office of Rare Diseases Research (ORDR). Now, see Genetic and Rare Disease Information Center (GARD) a program of the National Center for Advancing Translational Sciences (NCATS), funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
NIH Research. CRISP replaced by NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.
Orphanet (portal for rare diseases and orphan drugs--invaluable resources) "Rare diseases are rare, but rare disease patients are numerous"
Platelet Disorder Support Association, PDSA, for those with with immune (idiopathic) thrombocytopenic purpura or other platelet disorders, a website created by Joan Young, author of Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease.

Support Groups. This Inspire list of "health and wellness" support groups provides links related to Addiction (12 groups), Alternative and complementary medicine (6), Asthma and allergies (22), Autoimmune diseases (54), Blood and lymphatic disorders (42), Bones, joints and muscles (62), Brain and nervous system (75), Cancer (60), Caregivers (16), Children's health (60), Clinical trials (1), Diabetes and hormones (36), Diet and nutrition (17, Digestive system disorders (46), Ear, ose and throat (24), Eyes and vision (32), Fitness and exercise (8) Gay and lebian health (1), Genetic disorders (95), Health insurance (1), Heart and circulation (45), HIV and AIDS (2), Hospice, end-of-life care and bereavement (3), Infant health (43), Infectious diseases (41), Inspiration (3), Kidneys and urinary system (47), Lungs and respiration (41), Men's health (33), Mental health (23), Mind and body wellness (4), Oral health (19), Pain (7), Parenting (8), Plastic and reconstructive surgery (3), Pregnancy and childbirth (37), Rare diseases (44), Senior health (48), Sexual health (26), Skin conditions (33), Sleep disorders (9), Teen health (21), Undiagnosed medical problems (2), Women's health (56). This is by no means a complete list, but it is a start! If you don't find what you need, try googling all the terms related to what you want a group for, plus "support group."
Giving More Support to Support-Group Leaders (Laura Landro, WSJ, 4-16-12).
Sample Guidelines, American Self-Help Group Clearinghouse
Self-Help Group Sourcebook Online (American Self-Help Group Clearinghouse)
Mental Health & Psychology Resources Online (Psych Central)

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An Uncertain Inheritance: Writers on Caring for Family edited by Nell Casey. Wonderful writing, excellent insights into the complexities both of caring and of being cared for, during an illness.

An Unquiet Mind by Kay Redfield Jamison (about manic depression).

Better: A Surgeon's Notes on Performance by Atul Gawande

Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande

How Doctors Think by Jerome Groopman

How We Die by Sherwin Nuland (excellent descriptions of exactly how the various body systems fail, when they fail -- a primer even for healthy readers)

Illness as Metaphor: AIDS and Its Metaphors by Susan Sontag

In the Country of Hearts: Journeys in the Art of Medicine by John Stone

Just Here Trying to Save a Few Lives: Tales of Life and Death in the ER by Pamela Grim

Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, by Laurie Edwards

The Man Who Mistook His Wife for a Hat and Other Clinical Tales, by Oliver Sachs

The Measure of Our Days: New Beginnings at Life's End by Jerome Groopman

Medical Detectives, by Berton Roueche

Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine by Jerome Groopman

Unholy Ghost: Writers on Depression, ed. Nell Casey

You: The Smart Patient, An Insider's Handbook for Getting the Best Treatment, by Drs. Michael F. Roizen and Mehmet C. Oz, with the Joint Commission (one of a series by the charismatic Oprah favorite, Dr. Oz, and the knowledgeable Dr. Roizen)

The Thing About Life Is That One Day You'll Be Dead , David Shields' excellent autobiography of his body, is a fascinating little book about life and death and about what's happening to your body enroute from one to the other. Don't read it if you don't want to hear the bad news, but it does help explain things like why you have to make more trips to the bathroom as you age.