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Medical mysteries and patient stories


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


Diagnosis (Lisa Sanders, MD, New York Times Magazine)
Think Like a Doctor (Lisa Sanders, Well column, New York Times)
Unsolved Cases (Lisa Sanders)
Medical Mysteries (Sandra G. Boodman, Washington Post)
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!


Diagnosis columns by Dr. Lisa Sanders
(New York Times Magazine)


Her book: Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis. A few of the Diagnosis columns:
---He Thought He Just Had the Flu at First. Then His Heart Could Barely Pump. (1-2-19)
---He’d Never Had Allergies, But Suddenly He Had Two Episodes That Nearly Killed Him. Why? (1-17-19) A patient does his own sleuthing and figures out what is putting him into anaphylaxis.
---Why Was the Woman Having Trouble Seeing, if Her Eyes Were Fine? (12-18-18)
---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)


Think Like a Doctor
(Well section, New York Times)


Think Like a Doctor (roster of her columns)
Think Like a Doctor: Ordering the Right Test (Lisa Sanders, NY Times 10-26-11)


Diagnosis: Unsolved Cases (Medical Mysteries)


Dr. Sanders challenges readers to solve a tough medical mystery.

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.


Medical Mysteries
(Sandra G. Boodman's column, Washington Post


Boodman 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, Philly.com, 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, Philly.com, 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)

Miscellaneous stories about medical mysteries and diagnoses doctors can get wrong


PANDAS: When a Simple Strep Throat Leads to Frightening Behavior (Anna Medaris Miller, US News & World Report, 7-26-18) The condition is under-recognized and researched, but early detection is critical for a full recovery. PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
Boston Medical Mysteries (Boston.com) 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). For example, I'm Still Here (Inez Martinez as told to Erin McCoy, 12-14-18) Click on the tags or put the name of a disease you want to read more about in the search box, and bring up stories on that theme.
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 (Caring.com)
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 (TimetoChange.org, UK)
The First Signs of Schizophrenia ( (Schizophrenia.com--personal 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 HealthNewsReview.org'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 Blogborygmi.com
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 (Salon.com 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

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)
Tuberculosis
West Nile Virus
Zika virus
See also Antibiotic-resistant superbugs
Fungal infections




General information about infectious diseases and treatment for 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)

Centers for Disease Control and Prevention (CDC)
Infectious Diseases Society of America (IDSA)
ProMED (International Society for Infectious Diseases)
Trust for America's Health See its report, Ready or Not? Protecting the Public’s Health from Diseases, Disasters and Bioterrorism (The report finds the country does not invest enough to maintain strong, basic core capabilities for health security readiness. It includes a review of state and federal public health preparedness policies.)
Center for Public Health Policy, American Public Health Association
CDC, scientists brief journalists on status of vector-borne diseases in U.S. (Bara Vaida, Covering Health, AHCJ, 6-25-19) Diseases spread by kissing bugs, mosquitoes and ticks are sharply on the rise in the U.S., says an official from the Centers for Disease Control and Prevention (CDC). A webcast hosted by SciLine highlighted that the combination of climate change, international travel, changing land use, deforestation, and urbanization of rural areas are all driving vector-borne diseases to the highest numbers ever reported.
Vector-Borne Diseases (World Health Organization, 10-31-17) Information about Chagas disease (American trypanosomiasis), chikungunya virus (CHIKV), Crimean-Congo haemorrhagic fever, dengue fever, Japanese encephalitis, Leishmaniasis, Lymphatic filariasis, malaria, mosquito-borne diseases, Onchocerciasis (river blindness), plague, Schistosomiasis (also known as snail fever and bilharzia), sleeping sickness (human African Trypanosomiasis), yellow fever, Zika virus.
A Deadly Bacteria Has Killed People in Puerto Rico and Health Officials Didn’t Detect it (Mc Nelly Torres, Centro de Periodismo Investigativo, 6-5-19) Leptospirosis is no stranger to Puerto Rico and research by the Center for Disease Control and Prevention have shown that before people got sick after Hurricane Maria, health officials’ passive surveillance hampered the ability to detect and prevent getting infected with this bacteria. (Full story in English.)
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.
14 Diseases You Almost Forgot About Thanks to Vaccines (HealthyChildren.org, based on information from the CDC) Read about diphtheria, chicken pox, mumps, rotavirus, pneumococcal disease, whooping cough (Pertussis), measles, rubella (German measles, MMR vaccine), Hib, hepatitis A, hepatitis B, the flu (influenza). For each disease there are links to more information.
Vector-borne Diseases (Healthy Environments for Children Alliance) "In Asia, Japanese Encephalitis puts three billion people at risk every year. Malaria and dengue are also major public health problems in South-East Asia....While 8% of the world population lives in the Eastern Mediterranean Region, almost 11% of the global burden of vector-borne diseases is found there...Malaria is among the most prevalent causes of death and illness in Africa, where 90% of the globally reported cases of malaria take place. An estimated one million deaths from malaria occur each year, most of them in children under five years old....In Latin America and the Caribbean, Dengue Hemorrhagic Fever has infested all major cities....Nearly 95 million people in the Western Pacific are at risk of contracting malaria."
Connecting the dots between social determinants and infectious diseases (Bara Vaida, Covering Health, AHCJ, 9-27-18--Covering Health being a wonderful resource for medical writers and editors as well as patients doing deep research) "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.
Lessons from the History of Quarantine, from Plague to Influenza A (Eugenia Tognotti, Emerging Infectious Diseases, CDC, Feb. 2013) In a globalized world that is becoming ever more vulnerable to communicable diseases, a historical perspective can help clarify the use and implications of a still-valid public health strategy...."The use of segregation or isolation to separate persons suspected of being infected has frequently violated the liberty of outwardly healthy persons, most often from lower classes, and ethnic and marginalized minority groups have been stigmatized and have faced discrimination. This feature, almost inherent in quarantine, traces a line of continuity from the time of plague to the 2009 influenza A(H1N1)pdm09 pandemic."
Are illegal immigrants bringing ‘tremendous’ disease across the border, as Trump says? Unlikely (Louis Jacobson, Politifact, 7-23-15) The CDC, on its website, acknowledges that there’s a risk, though it’s important to note that the risk doesn’t stem exclusively from undocumented immigrants. Indeed, they probably represent a distinct minority of border crossers. Approximately 300 million legal crossings take place from Mexico into the United States annually along the 1,969-mile border, and about 15 million Americans visit Mexico each year, according to CDC. "The sheer number of people who live, work, and travel between the United States and Mexico has led to a sharing of culture and commerce, as well as the easy transportation of infectious diseases," CDC writes on its website. For this reason, CDC and its Mexican counterpart have established a disease-surveillance infrastructure on the border. CDC specifically cites the possibility of the cross-border movement of "HIV, measles, pertussis, rubella, rabies, hepatitis A, influenza, tuberculosis, shigellosis, syphilis, Mycobacterium bovis infection, brucellosis, and foodborne diseases, such as infections associated with raw cheese and produce," though vaccination has helped reduce the risk.
Binational Border Infectious Disease Surveillance Program (BIDS) CDC’s BIDS program works closely with the four US states along the US-Mexico border to foster local, state, and federal collaboration to improve the detection, reporting, and prevention of infectious diseases of binational importance. BIDS projects address a wide range of diseases including dengue, foodborne infections, influenza, Rocky Mountain spotted fever, tuberculosis, and Zika.
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.

Books about infectious diseases, pandemics, and antibiotic resistant bacteria


Medical and science journalists interested in this topic MUST join AHCJ, which recommended these titles on this topic:
The American Plague: The Untold Story of Yellow Fever, the Epidemic That Shaped Our History by journalist Molly Caldwell Crosby. Murphy spotlights the heroic role of Philadelphia's free blacks in combating the disease, and the Constitutional crisis that President George Washington faced when he was forced to leave the city—and all his papers—while escaping the deadly contagion. Yellow fever caused more than 100,000 deaths in this country, making it the most feared disease in North America for 200 years.
Big Chicken: The Incredible Story of How Antibiotics Created Modern Agriculture and Changed the Way the World Eats by Maryn McKenna (an award-winning investigative journalist who writes often about infectious diseases, especially those that are antibiotic-resistant, on how antibiotics transformed agriculture and planted the seeds for a world where antibiotics may no longer work in medicine). Must read, and it may turn you against eating chicken!
Deadliest Enemy: Our War Against Killer Germs by Michael Osterholm and Mark Olshaker, on the history of pandemics and what political leaders can do to prevent them.
The Great Influenza: The Epic Story of the Deadliest Plague in History by John M. Barry. Masterful narrative of the deadly 1918 influenza pandemic, which killed more people in twenty-four months than AIDS killed in twenty-four years, more in a year than the Black Death killed in a century. "An authoritative and disturbing morality tale of science, politics, and culture... One of the strengths is that it goes well beyond medical facts and figures."~Chicago Tribune. An afterword for the paperback edition cites similarities with the bird flus that have emerged in Asia.
The Next Pandemic: On the Front Lines Against Humankind’s Gravest Dangers by Ali Kahn, former head of the Office of Public Health Preparedness and Response at the Centers for Disease Control and Prevention. An inside account of the fight to contain the world's deadliest diseases—and the panic and corruption that make them worse, with advice on how to prevent pandemics.
Pandemic: Tracking Contagions from Cholera to Ebola and Beyond by Sonia Shah, who, weaving history, reportage, and personal narrative, surveys past pandemics and writes about how dealing with cholera helped prepare the world to prevent future pandemics. As one reader writes, "In the medical profession we constantly admit (often unknowingly) the next 'bad' critter into our population. This writer gives a tremendously easy understanding of the How and Why and possible Where, leaving us to ponder When."
The Panic Virus: The True Story Behind the Vaccine­ Autism Controversy by Seth Mnookin. Who decides which facts are true? "Mnookin's book is an unsparing brief against the vaccine skeptics. But in a larger sense, this volume is less about the insurrection against inoculations than it is about the democratization of information. . . . Less about the contagion of ideas than about the contagion of misinformation and mistrust that metastasizes in the new technology." --David M. Shribman The Boston Globe
Rising Plague: The Global Threat from Deadly Bacteria and our Dwindling Arsenal to Fight Them by Dr. Brad Spellberg, who clearly and concisely reviews the problems associated with antibiotic resistance and issues a call to action against drug-resistant bacteria.

ttt



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


Medieval Diseases Are Infecting California’s Homeless (Anna Gorman and Kaiser Health News, 3-8-19) Infectious diseases—some that ravaged populations in the Middle Ages—are resurging in California and around the country, and are hitting homeless populations especially hard. Typhus (a medieval disease spread by infected fleas on rats and other animals), tuberculosis, and other illnesses are spreading quickly through camps and shelters. People in Washington State have been infected with the diarrheal disease shigella, spread through feces, as well as Bartonella quintana, or trench fever, which spreads through body lice. Hepatitis A, also spread primarily through feces, infected more than 1,000 people in Southern California in the past two years. The infections are not a surprise, given the lack of attention to housing and health care for the homeless and the dearth of bathrooms and places to wash hands, says Jeffrey Duchin, the health officer for Seattle and King County, Washington, which has seen shigella, trench fever, and skin infections among homeless populations. Different infections occur in shelters, including tuberculosis, a disease that spreads through the air and typically infects the lungs. “It really is unconscionable,” says Bobby Watts, the CEO of the National Health Care for the Homeless Council, a policy and advocacy organization. “These are all preventable diseases.”
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.
Unlocking the Mechanics of the Urinary Tract Infection (Lina Zeldovic, The Atlantic, 3-23-16) New research helps explain how bacteria send their victims running to the bathroom.
Bladder Infection (Urinary Tract Infection—UTI) in Adults (National Institute of Diabetes and Digestive and Kidney Diseases, NIDDK) Definition and facts; symptoms and causes; diagnosis; treatment; eating, diet, and nutrition; clinical trials; related conditions & diseases; etc.)
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 (geared 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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Appendicitis

I added this section after one friend (Jane) managed to survive a burst appendix and another (Bob) didn't.
When a Burst Appendix Doesn't Kill You (Carey Goldberg, CommonHealth, WBUR7-13-12) First, the warning label for this story: A perforated appendix can kill you. If you experience symptoms of appendicitis, particularly sharp pain in the lower right area of your abdomen, get prompt medical care. Scroll down for an illustration.
Sepsis and Appendicitis (Sepsis Alliance) Your appendix can become inflamed for a number of reasons. It can be blocked by mucus, stool (bowel movement), or lymphatic tissue, part of the lymphatic system that helps fight infection. The normally harmless bacteria in the appendix then begins to attack the appendix walls, resulting in inflammation and infection. If left untreated, this can rupture the appendix wall, causing the infection to spread in the abdomen and, possibly, throughout the body, resulting in sepsis or severe sepsis
Appendicitis Can Often Be Treated With Antibiotics (Steven Reinberg, WebMD) About 80 percent of patients can try medication first, study says. About 80 percent of patients with an inflamed appendix, commonly called appendicitis, don't need to have their appendix surgically removed, and those who ultimately do need the surgery aren't hurt by waiting, according to Dr. Paulina Salminen, of Turku University Hospital in Finland. However, there are two types of appendicitis -- one that always requires surgery and a milder form that can be treated with antibiotics.

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Clostridium difficile (C. diff or C. difficile)


Clostridium difficile is a bacterium that can cause diarrhea and more serious intestinal conditions such as colitis.
About Clostridium difficile (Minnesota Dept. of Health)
Tips to prevent Clostridium difficile transmission in your home (Minnesota Dept. of Health)
New Clostridium difficile guidelines Updated guidelines on the diagnosis and treatment of Clostridium difficile (C. diff.) by IDSA and the Society for Healthcare Epidemiology of America (SHEA) have published in Clinical Infectious Diseases. Diagnosis and treatment of C. diff. has evolved significantly since the last guidelines were published in 2010.
Protect Yourself Against C. Diff Infections (Rachel Rabkin Peachman, Consumer Reports, 10-21-17) There's an alarming rise in recurring, hard-to-treat infections caused by the bacterium clostridium difficile, or C. diff. This deadly bacterium lurks where you’d least expect it to and where it can do a great deal of harm—in hospitals and other healthcare facilities. "Most people who develop a C. diff infection are taking an antibiotic or took one in the previous few months. In addition to harmful bacteria, antibiotics also destroy the protective bacteria that normally live in the intestines for up to several months. That allows dangerous C. diff bacteria an opportunity to take hold and multiply....But once-reliable antibiotic treatments are no longer working in many cases, according to Lewis's study....An important contributor to the increase in intractable C. diff infections is likely the overuse of “specific antibiotics, namely fluoroquinolones,” which includes commonly prescribed medications such as Cipro and Levaquin, known as “broad spectrum” antibiotics because they kill a wide variety of bacteria. Because those antibiotics kill more of your body’s “good” bacteria than more narrowly targeted drugs such as penicillin, they leave you more vulnerable to C. diff.
Consumer Reports Names Hospitals With High C. Diff Infection Rates (Plus advice on how to stay safe) Antibiotics can kill off deadly infectious bacteria. But they can also kill off the “good” bacteria that normally grow in your stomach, which in turn can allow bad bacteria like C. diff to thrive. Make sure you really need that antibiotic. Insist on hand-washing and gloves. Watch out for heartburn drugs. ("Hospital patients are sometimes prescribed heartburn drugs called proton-pump inhibitors, such as esomeprazole (Nexium and generic) and omeprazole (Prilosec and generic) to prevent heartburn or bleeding in the stomach. But those medications can also increase the risk of C. diff infections taking hold in your stomach because lower acid levels make it easier for the bacteria to pass through the gut unharmed into the lower intestine, where they thrive.") Ask about the hospital’s protective measures. See chart with lowest-rated hospitals by state.
C. difficile infection (Mayo Clinic) "Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon."
Clostridium Difficile Infections (Medline Plus)
Consumer Reports Names Hospitals With High C. Diff Infection Rates (Jeneen Interlandi, Consumer Reports, 9-27-16) "The CDC has laid out a list of methods for tackling C. diff that includes detailed protocols for hand hygiene and room cleaning as well as suggestions about nurse-to-patient ratios and the importance of hospital leadership. But the agency lacks the authority to mandate such protocols, and it’s unclear how many hospitals are taking the initiative on their own. For example, the biggest risk factor for C. diff infection is antibiotic overuse. But the CDC reports that so far, only 39 percent of all hospitals have an antibiotic stewardship program in place."
C diff Remains a Challenge Even for Nation's Top Hospitals (Norra MacReady, Medscape, 9-30-16)
Clostridium difficile Infection (Daniel A. Leffler and J. Thomas Lamont, N Engl J Med 2015; 372:1539-1548, 4-16-16, DOI: 10.1056/NEJMra1403772, For subscribers only). This 2015 review of C. difficile has a section on Fecal microbial transplantation. "[Safe and superior to vancomycin alone for recurrent *C. difficile* infection."
Fecal Transplants: Treat Them Like Tissue, Not Like Drugs (Maryn McKenna, 2-23-14) See also her other articles on C. diff and fecal transplants. She's the go-to journalist for diseases and infections caused by superbugs.
Fecal Transplantation - Current Status, FDA Policy & A Patient Advocate's Story (Catherine Williams Stone Duff, founder of the Fecal Transplant Foundation, in a 30-minute educational video on Health Watch USA) She survived numerous C. difficile infections and when doctors said she couldn't survive, she insisted on trying the fecal transplant. Since surviving, she has become an expert on fecal transplants, which are more than 90% successful in curing antibiotic resistant c.difficile infections.
Faecal transplants beat antibiotics in clinical trial (Ed Yong, Phenomena: A Science Salon, 1-17-13) The first results from a faecal transplant trial have been published in the New England Journal of Medicine, and they are a resounding vindication for the technique.
Drug Companies and Doctors Battle Over the Future of Fecal Transplants (Andrew Jacobs, NY Times, 3-3-19) As pharmaceutical companies seek to profit from the curative wonders of human feces, doctors worry about new regulations, higher prices and patients attempting DIY cures.
Clinical Inquiries: How effective and safe is fecal microbial transplant in preventing C difficile recurrence? (Meyers S, Shih J, Neher JO, Safranek S.,J Fam Pract. 2018 Jun;67(6):386-388. On National Library of Medicine.) "Fecal microbial transplant (fmt) is reasonably safe and effective. In patients who have had multiple Clostridium difficile infections (CDIs), fecal microbial transplant (FMT) results in a 65% to 80% cure rate with one treatment and 90% to 95% cure rate with repeated treatments compared with a 25% to 27% cure rate for antibiotics (strength of recommendation [SOR]."
Cardiac allograft vasculopathy following fecal microbiota transplantation for recurrent C. difficile infection. (S Barfuss, et al., Transpl Infect Dis. 2018 Dec;20(6):e12983. doi: 10.1111/tid.12983. Epub 2018 Sep 19. Available on National Library of Medicine) Body of young transplant patient whose C. diff was treated with FMT later rejected the transplant.
The Super-Donor Phenomenon in Fecal Microbiota Transplantation (Brooke C. Wilson, Tommi Vatanen, Wayne S. Cutfield, and Justin M. O'Sullivan, Frontiers in Cellular and Infection Microbiology, 1-21-19) A number of studies suggest that FMT success is dependent on the microbial diversity and composition of the stool donor, leading to the proposition of the existence of FMT super-donors. The identification and subsequent characterization of super-donor gut microbiomes will inevitably advance our understanding of the microbial component of chronic diseases and allow for more targeted bacteriotherapy approaches in the future.

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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.
The World Health Organization Finally Sounds Its Loudest Alarm Over Ebola in the Congo (Ed Yong, The Atlantic, 7-18-19) The ongoing outbreak is the second worst in history and has proved to be unusually difficult to contain. WHO has finally declared the crisis a “public health emergency of international concern” (PHEIC for short)—a label that it has only used four times before. For many parties involved in the outbreak response, the PHEIC decision came bafflingly late.
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)
Storygram: Amy Maxmen’s “How the Fight Against Ebola Tested a Culture’s Traditions” (Amanda Mascarelli, The Open Notebook, NASW, 10-3-17) This storygram (story diagram) annotates an award-winning story to shed light on what makes some of the best science writing so outstanding. The story itself: How the Fight Against Ebola Tested a Culture’s Traditions (Amy Maxmen, National Geographic, 1-30-15) To stop infected bodies from spreading the disease in Sierra Leone, health officials persuaded local leaders to change how villagers mourned.
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."
Ebola research continues in U.S. as violence inhibits treatment efforts in Africa (Bara Vaida, Covering Health, AHCJ, 3-1-19) Recent violent attacks on Medicines San Frontieres (MSF) Ebola treatment centers in the Democratic Republic of Congo raise the prospect that the outbreak could grow even larger and more dangerous. On Feb. 24, MSF’s Ebola treatment center in Katwa was attacked and unknown assailants set another on fire in Butemo on Feb. 26. Both centers were located in the hotspots of the ongoing outbreak, which began mid-2018. As of Feb. 26, there were 875 diagnosed cases of Ebola in the DRC (810 confirmed, 65 probable), including 551 deaths. MSF has since closed its treatment center and it isn’t clear what will happen in Butemo.
Ebola Spreads Amid Violence in the Democratic Republic of Congo, and U.S. Role Remains Limited (Josh Michaud and Jennifer Kates, Kaiser Family Foundation, 1-18-19) Violence and unrest continue to hinder efforts to control the Ebola outbreak in the Democratic Republic of Congo. A new issue brief examines why the outbreak continues, describes the ongoing U.S. role in response, and discusses what might come next.
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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Meningitis

Meningitis (CDC) "Meningitis is an inflammation (swelling) of the protective membranes covering the brain and spinal cord. A bacterial or viral infection of the fluid surrounding the brain and spinal cord usually causes the swelling. However, injuries, cancer, certain drugs, and other types of infections also can cause meningitis. It is important to know the specific cause of meningitis because the treatment differs depending on the cause."
Meningitis (Kids' Health) Common symptoms include fever, lack of energy, irritability, headache, sensitivity to light, stiff neck, and skin rashes.
Meningitis (Mayo Clinic) Symptoms, signs in newborns, causes, when to see a doctor, risk factors, complications, prevention, immunizations (four types). Once over lightly on four strains: bacterial meningitis, viral meningitis, fungal meningitis; and other.
Why is meningitis so dangerous? (YouTube, Melvin Sanicas, TedEd, 11-19-18) Of the three main types of meningitis--fungal, vital, and bacterial--the last is the deadliest by far. It can trick the blood-brain barrier into letting it get through to the brain. It can be spread through coughing, sneezing, or touching, or through sharing cigarettes, tooth brushes, or utensils. Once the bacteria enter the nose, mouth, or throat, they cross the surrounding membranes, enter the blood stream--and spread rapidly, in the worst cases causing death within a day. Get to a hospital right away when meningitis is suspected, as it can be treated. Fast treatment, or better yet prevention, is critical. Vaccines are available to prevent the disease, and are especially important for children and people traveling to areas where infection is common.
The mystery of meningitis (Cosmos: The Science of Everything, 7-31-17) Meningitis is generally a disease doctors expect to see only in children or young adults. So clinicians’ antennae aren’t up when someone older comes into the surgery sick, writes Norman Swan.
Medical Mystery: What caused a young man’s confusion, headache and fever? (Gul Madison, Philly Inquirer, 9-7-18)
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PANDAS/PANS


PANDAS Network. Explore this site for more information. See, for example, basic medical information. "PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)....PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more....The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms....When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes)."
PANDAS: When a Simple Strep Throat Leads to Frightening Behavior (Anna Medaris Miller, US News & World Report, 7-26-18) "The condition, which may affect anywhere from 1 in 200 to 1 in 500 kids (though the actual prevalence is unknown), is mostly characterized by obsessive compulsive disorder, tic disorders or both developing or worsening dramatically and suddenly after a bout with strep throat, or another type of strep infection, according to the National Institute of Mental Health. Indeed, Pohlman's son had been struck with several bouts of strep throat not long before his behavior change." The immune system is fighting the strep infection then erroneously begins to attack other organs. In the case of PANDAS – as well as autoimmune encephalitis – that other organ is the brain.The condition is under-recognized and researched, but early detection is critical for a full recovery. PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
Hidden Invaders (Pamela Weintraub, Discover, 3-29-17) For pediatric rheumatologist Jennifer Frankovich, 7-year-old Paul Michael was patient zero — her first encounter with a newly recognized, still-controversial diagnosis called pediatric acute-onset neuropsychiatric syndrome, or PANS. She already had some experience treating the psychiatric symptoms of autoimmune disease — a frightening scenario in which the body turns on itself and attacks the brain. Twenty vials of his blood helped tell the story: Dangerously low blood platelets suggested an underlying imbalance, and signature proteins signaled some type of autoimmunity at the root. Thus commenced years of trial-and-error therapy, conducted mostly in a psychiatric ward.
Parents of children with PANS/PANDAS: please take the Harvard-MGH 2018 survey (PANDAS Network)
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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)
Sexually transmitted infections on the rise in rural America: A research roundup (Chloe Reichel, Journalist's Resource, 4-27-19) “Compared with urban hubs, rural populations tend to have less access to public health resources, less experience with syphilis and less willingness to address it because of socially conservative views toward homosexuality and nonmarital sex,” Lauren Weber writes for Kaiser Health News. STI screening is less common in rural areas. “Social and/or structural barriers to testing in rural communities,” such as a lack of social support, stigma and concerns about maintaining confidentiality “may be significantly contributing to delayed HIV diagnosis among" minority men who have sex with men in Florida.
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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Tuberculosis


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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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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Zika virus

Bottom line: politicians behaving badly.
Senate to Take Up House Bill on Zika Funding, Barbs and All (Carl Hulse, NY Times,6-27-16) Senators have a fight of their own coming over a spending package to address the Zika public health threat. The military construction and veterans’ spending bill forced through by House Republicans with no debate early Thursday morning contains $1.1 billion for Zika preparation and prevention — but it also contains some poison-pill provisions that are likely to drive off any Democratic support, notably one restricting the use of the money by Planned Parenthood. Republicans, after taking months to advance the funding for the mosquito-borne disease, will no doubt argue that it is now Democrats who are blocking the funds. But the Republican record on the response is pretty clear, so that argument will be a tough sell.
Democrats block Zika funding bill, blame GOP (Burgess Everett and Jennifer Haberkorn, Politico, 6-28-16) The [Zika] stalemate carries real political risk: In 2014, Republicans blasted the Obama administration and Democrats’ response to Ebola, contributing to a public perception in the midterm election of feckless Democratic rule. Republicans gained control of the Senate that year — but now find their playbook is being used against them. Republicans “taught us with Ebola,” said Senate Minority Whip Dick Durbin (D-Ill.). “A public health crisis? Take it seriously. I don’t believe they’ve taken it seriously at all.”
Uncovering a bombshell about Zika in Puerto Rico (Beth Murphy, AHCJ, 1-28-19) After Hurricane Maria hit in September 2017, the statistics ended altogether. So, too, according to the Health Department, had Zika. The hurricane had essentially washed away the problem. But we learned through our network of Zika doctors and scientists that Zika testing had stopped. There were no statistics to report because the government had stopped testing. Answering the question “Why?” became the heart of our story. The investment of time we had made on the ground and the relationships we had built over the two years allowed us exclusive access to a new post-hurricane Zika study started by Zorrilla in collaboration with the CDC.The bombshell: Zika rates in the pregnant women being tested are nearly as high as they were at the height of the epidemic.
The public health planners' perfect storm: Hurricane Matthew and Zika virus (Qanta Ahmed and Ziad Memish, = Travel Medicine and Infectious Disease, ResearchGate, Dec. 2016) Hurricanes can disrupt the urban environment in a way that increases the likelihood of vector-borne illnesses and their aftermath can severely strain the very infectious disease and infection control academe needed to combat vector-borne outbreaks. This commentary attempts to examine the challenges posed by Hurricane Matthew in Florida's efforts to contain Zika.
The storm after the storm (Reveal and PRX, podcast, 10-27-18) Doctors in Puerto Rico are outraged at the government's unexpected decision to declare the Zika crisis over in the aftermath of Hurricane Maria.
What Ever Happened to Zika? (Groundtruth, PRX, and WGBH, 11-8-18) Before Hurricane Maria, the Zika crisis was already pushing Puerto Rico’s health care system to the limit. Then the storm came and crippled it completely — no more testing pregnant mothers for Zika, and no more tracking babies born to Zika-infected mothers. A year later, things are still not back to normal. And it’s becoming clear that many babies that seem fine may not be.
What’s the truth about Zika virus in post-hurricane Puerto Rico? (Beth Murphy, PBS News Hour,11-14-18) Watch and/or read transcript. Q&A with Valerie Rodriguez, Dr. Carmen Zorrilla, Dr. Alberto De La Vega, Dr. Marian Ortiz. With public health officials claiming no new cases on the island, where tourism is big business, Dr. Zorrilla took matters into her own hands. She teamed up with the CDC to start a new testing program for pregnant women. Physicians say they fear the Puerto Rican government is more interested in protecting tourism than public health. There's even evidence that the hurricane created more breeding grounds for mosquitos.
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Useful Links

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)

xx

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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A READING LIST OF BOOKS ON MEDICINE, HEALTH CARE, AND CAREGIVING -- FOR PATIENTS AND CAREGIVERS

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.