medical help updates, the wsj

Have accumulated some Wall Street Journal articles that have medical updates which might prove helpful, whether for you or someone you know.

“How Life’s Details Help Patients – Personal Observations Provide Doctors With New Information to Aid in Treatments” 

Project Health Design is researching the benefits of patient input in the treatment of their illnesses. Unlike my attempts at self-diagnosis, the use of smartphones and wireless monitoring devices are important tools used in tracking patient information. Nikolai Kirienko suffers from Crohn’s disease, “an inflammatory digestive disorder.” Thirty years old, Kirienko has had surgery 6 times in 6 different hospitals. Throughout, he kept an electronic journal. His observations helped “avert disaster on several occasions. Once, as he was being rolled into the operating room, he noticed swelling in his fingers that he recognized as a sign of a blood clot, of which Crohn’s patients have a higher risk. He had suffered two clots in the past and recorded the symptoms in his journal, which he says ‘gave me the confidence’ to insist on delaying the surgery.” As a result of logging his own personal data, Kirienko initiated the idea for Crohnology.MD. Researchers are working with Berkeley undergrads on Kirienko’s project which “will let Crohn’s patients with a smartphone track daily digestive symptoms and sleep patterns along with signs of anemia, depression and weight loss that could signal a worsening of the condition, which affects 600,000 Americans. Known as ‘observations of daily living,’ the data will be charted, along with lab results and other measures, to create visual trend lines on a website–and viewed by patient and doctor.”

Project Health Design has involved other academic medical centers: asthmatics are using smart phones to track their symptoms, medications and physical activity; mobile devices are being created to help parents track “the progress of pre-term low-weight babies. At San Francisco State University, researchers are providing smartphones to overweight teens to help them monitor physical activity, food intake, and mood changes, to see if it can help them overcome obesity.” Collecting the data obtained, PHD teams are integrating it into personal health records so that physicians can follow patterns which might forewarn of health problems. PHD’s national program director, a professor at Wisconsin-Madison School of Nursing, Patti Brennan explains “We don’t want to track every missed footfall, but we are making it possible for patients to record what they felt was important, and what they wanted the doctor to know,…”  PHD researchers at the University of Massachusetts Medical Center helped design a handheld electronic pain diary for patients. Recalling the intensity of pain was easier at 2 hour intervals rather than on a daily basis. So they entered their observations by touching the screen on the device over a period of 3 to 4 days. ” ‘To take care of someone with pain, a doctor really needs to know what the experience is like over several days, and to know things like how pain interferes with sleep.’ ” according to Dr. Roger Luckmann, the physician directing the project. He is working to develop a commercial version.

Following are websites that allow patients to enter daily health data and observations that provide useful feedback to be shared with their physicians.

  • The Carrot.com – Online journal lets users track 30-plus health factors including weight, food intake, energy level and exercise and input data from an iPhone. Produces reports that track factors together, such as exercise and mood.
  • PatientsLikeMe.com – Offers surveys about diseases, conditions, treatments and symptoms. Users can chart health over time and compare progress to patients with similar conditions.
  • MyPyramidTracker.gov – Government-sponsored site lets users enter dietary information and exercise. Provides picture of food intake vs. activity level for several days or up to a year. Compares daily dietary information and exercise to current guidelines.
  • Keas.com – Offers tools to track personal data and health plans to manage weight, chronic conditions, depression or pregnancy. Users can sign up for condition-specific care plans such as headaches and keep diaries on headache triggers.
  • RevolutionHealth.com – Provides health trackers for blood pressure, blood sugar, pregnancy weight gain, pregnancy temperature, exercise.
  • Baby-Connect.com – Lets authorized users on iPhones, iPads, ipods or website track daily information on infants including food intake, diaper changes, sleep, mood, growth milestones, medications and vaccines.
  • HealthButler.com – Preventive health information service lets users track healthy habits and compliance with preventive health measures over time; links screening and preventive history to Google Health personal profile.    

“New Hope in Fatigue Fight”

“Researchers said they had identified a family of retroviruses in patients with chronic fatigue syndrome, opening up a potentially promising new avenue of treatment for a debilitating disease that afflicts as many as four million Americans and 17 million people world-wide. The finding will likely spur patients with the condition to seek treatment with drugs used to fight HIV, the virus that causes AIDS. Although HIV and the newly identified virus group are different, they are both retroviruses.” If chronic fatigue syndrome is a virus, then it goes a long way in legitimizing the complaints of its victims. Since its debilitating symptoms “wax and wane…patients say friends, co-workers and even family members don’t believe they are really sick. Studies finding a viral connection with the disease would completely transform how the illness is treated and viewed.”

A retrovirus called XMRV may be related to CFS. Both may be members of the MLV, murine leukemia virus-related viruses, family. The October issue of the journal Science reported a research conducted at the Whittemore Peterson Institute “found XMRV in a majority of fatigue patients.” However a more recent report by the CDCP, Centers for Disease Control and Prevention found no evidence of XMRV in CFS patients. “…a large-scale clinical trial testing HIV drugs against the ailment isn’t likely” until further scientific evidence is developed linking the virus to chronic fatigue syndrome. Drug companies Gilead Sciences Inc., and Merck and Co., Inc. would proceed with testing once more proof is secured.

Doctors and patients are already testing the connection between XMRV and CFS. Fifty-six year old doctor and chronic fatigue syndrome patient, Jamie Deckoff-Jones, “has been blogging about her experiences and those of her 20-year-old daughter. Both tested positive for XMRV and are taking a combination of three anti-retrovirals.” Where a year ago Dr. Deckoff-Jones would get up for short periods of time a day, after 5 months on the drug, she was recently able to attend an XMRV conference in Reno. Her daughter, meanwhile, went to a party and is enrolling in community college. “This is all very new, and there is no way to know if improvement will continue,…but we appear to be on an uphill course.”

Comforting Children Without Pills and Shots

It seems alternative medicine is becoming acceptable to mainstream medicine, not only for adults but for children as well. “With seriously ill children often taking so many medicines, parents increasingly are asking for nondrug treatments–such as meditation–to help their kids cope with drug side effects or symptoms of conditions from asthma to cancer. These ‘complementary’ medicine strategies are not meant to replace conventional medicines or procedures but to be used in conjunction with them to combat issues such as nausea induced by chemotherapy, or the stress and anxiety of being sick and in a hospital.” Pediatrics professor and head of the Center for Integrative Medicine at Wake Forest in Winston-Salem, N.C., Kathi Kemper studies the mind-body connection. In 2008 she found that live harp music helped 8 premature babies gain weight. “To figure out what was going on, Dr. Kemper’s group put devices called actimeters, which measure very small movements, on the legs of the infants and found that those babies who were exposed to the music were alert and paying attention compared to those in a quiet room or getting the usual care. …’music helps them sleep and be less tense,’ …Soothed babies exhibit fewer tiny muscle movements compared with more tense babies, which reduces the amount of calories they burn.”

Dr. Timothy Culbert, medical director of the integrative medicine program at Minneapolis-based Children’s Hospitals and Clinics of Minnesota, one of this country’s largest hospital-based, pediatric complementary medicine programs. Culbert feels “Pediatrics as a profession needs to catch up.” He and a team of colleagues are on the verge of launching a study to examine further the use of nondrug coping skills for kids with cancer. The study is being launched in 4 hospitals here and in Canada. The “Comfort Kit” had been designed by Culbert’s team years ago to teach children “deep-breathing relaxation techniques; aromatherapy, in which patients inhale chemicals produced by plant oils; and acupressure, a variant of acupuncture with pressure applied to certain points in the body.” In a study with 150 kids who had surgery “87% said the techniques helped them cope with pain after the procedure. Another study conducted last year found that the vast majority of kids with cancer reported that acupressure helped relieve their feelings of nausea.”

Alternative medicine can be very useful in supplementing a patient’s medical treatment. ” ‘If it’s a way of coping, I say go for it, because it’s safe,’ says Dr. Kemper. Families just need to be cautious if a therapy has side effects, is costly or is used instead of a therapy that is known to be effective, she says.”

I agree, go for it!