PHE - Resources

"In 2009, Ms. Leon went to the WomenHeart Science and Leadership Symposium at the Mayo Clinic, where she met Dr. Sharonne N. Hayes, a professor of cardiovascular medicine at Mayo. At that time, the largest study on SCAD included 43 patients. "I walked up to Dr. Hayes and told her we had 70 people, and we wanted research," Ms. Leon recalled. "She was like, 'Wow.'" "Everything I learned about SCAD in my medical training was wrong," Dr. Hayes said. By 2010, with the help of Dr. Hayes, and subsequently SCAD Research Inc., an organization founded by Bob Alico, who lost his wife to SCAD, Dr. Hayes devised an innovative way to do research, using online networks of far-flung patients and analyzing genetic and clinical data. "We never imagined there would be 1,000 female patients in our virtual registry," Dr. Hayes said."

Sharon, telling your story this article is an act of bravery and determination. Your strength is an inspiration.

Mimi Guarneri on PBS!

"N-of-1 or single subject clinical trials consider an individual patient as the sole unit of observation in a study investigating the efficacy or side-effect profiles of different interventions. The ultimate goal of an n-of-1 trial is to determine the optimal or best intervention for an individual patient using objective data-driven criteria. Such trials can leverage study design and statistical techniques associated with standard population-based clinical trials, including randomization, washout and crossover periods, as well as placebo controls. Despite their obvious appeal and wide use in educational settings, n-of-1 trials have been used sparingly in medical and general clinical settings. We briefly review the history, motivation and design of n-of-1 trials and emphasize the great utility of modern wireless medical monitoring devices in their execution. We ultimately argue that n-of-1 trials demand serious attention among the health research and clinical care communities given the contemporary focus on individualized medicine. Keywords: clinical equipoise, early-phase trials, individualized medicine, n-of-1, remote phenotyping, single patient trial, treatment repositioning, wireless health"

I met Tahir Bhatti during my Ornish Lifestyle Medicine transformation at Jacobs Medical Center UCSD. Tahir would sub into our support group whenever Ozzie Gontang was traveling. He is a great teacher. "Holistic Healers, Wellness Coaches, and Life-partners, Tahir Bhatti & Ayesha Suneja  have spent the last 20 years researching, teaching and guiding others towards mind-body-spirit healing, transpersonal wellness and spiritual growth.   Originally from India and Pakistan, both Ayesha and Tahir were raised in cultures that naturally cultivated spirituality, meditation and holistic healing practices.   Their passion for integrating spirituality into their clinical work led them to further their studies in Eastern philosophy, meditation, soul consciousness and self-realization.   Due to their exposure to ancient Eastern philosophies at a young age and their extensive training in Western Medicine & Psychology, their eclectic studies are balanced in the Sciences and the Ancient Truths.     By integrating both philosophies Tahir and Ayesha have created a blend of Eastern and Western Coaching Practices that is truly unique."

"Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together."

"Xconomy San Diego -  LunaDNA, a startup that is offering individuals company stock in exchange for personal genomic and health information in a bid to build a database that could help advance scientific research, is merging its research platform with the Genetic Alliance's Platform for Engaging Everyone Responsibly (PEER)."

"The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on the issue of diagnostic error. Misdiagnosis is quite common in Lyme disease and the consequences can be devastating. The SIDM website recently featured the personal story of LymeDisease.org's Lorraine Johnson, and the lessons learned from her own experience with diagnostic error. It is re-published here with SIDM's permission."

Abstract: INTRODUCTION: Spasticity in chronic spinal cord injury is a condition that can have negative repercussions on the patient's quality of life. Its treatment is complex and sometimes the outcome is insufficient. Cannabinoids have recently been used in multiple sclerosis to successfully treat spasticity that is refractory to other therapies. AIM: To quantify the clinical response of a group of patients with spastic chronic spinal cord injury to the orally administered drug delta-9-tetrahydrocannabinol-cannabidiol (Sativex®) as medication for use in special situations. PATIENTS AND METHODS: The research consists of a six-month observational study in patients with chronic spinal cord injuries with refractory spasticity. The variables collected were: modified Ashworth scale, Penn spasm frequency scale, Numeric Rating Scale, and Visual Analogue Scale for pain. Additionally, clinical variables and side effects of the treatment were also collected. RESULTS: Fifteen patients took part in this study. A significant improvement was observed on three of the scales recorded: modified Ashworth scale (z = -2.97; p = 0.003), Penn spasm frequency scale (z = -2.76; p = 0.006) and Numeric Rating Scale (z = -3.21; p = 0.001). The use of the drug was withdrawn in two patients due to side effects. CONCLUSIONS: Sativex can be considered an alternative in patients with spasticity associated with chronic spinal cord injury for whom other therapeutic measures have been insufficient. Further studies need to be conducted before the use of this drug can be recommended and so as to define a complete profile of its long-term side effects.

"Q. What are the consequences of taking antibiotics on your gut microbiome? Does the gut ever fully recover? A. Most gut bacteria recover quickly, but there can be long-lasting consequences from taking antibiotics. The changes, however, are not necessarily harmful. The gut microbiome, the roughly 10 trillion to 100 trillion bacteria and other microorganisms that live in the digestive tract, contributes to health by synthesizing vitamins, metabolizing drugs and fighting pathogens. Anything that disrupts the balance of microorganisms, such as antibiotics, which can kill both "good" and "bad" bacteria, has the potential to cause disease."

"UC San Diego medical researchers have for the first time used 3D printing technology to create a spinal cord and implant it with neural stem cells into rats with spinal cord injuries, the university announced Monday."

"Agile science is: people-centered as it is grounded in the real-world needs of individuals.   success-oriented as we ground all evaluation and optimization on clearly defined criteria of success.   efficiently  rigorous via the classic scientific concept of triangulation. We strive to clarify the most important assumption being made at a given moment and then evaluate it as efficiently and rigorously as possible. We then iterate and test again, often with a complementary but also efficient method for the stage of the process to balance strengths/limitations of the approaches." Eric Hekler, Ph.D. Associate Professor Department of Family Medicine & Public Health Director, Center for Wireless & Population Health Systems

Eric Heckler's comment ACTION-TARGETED STUDIES: For these studies, the focus is more on vetting if an action is "worth it" for a person. An example of this is Sayali's dissertation, http://www.hack-your-health.org/.

"Sayali Phatak PhD Candidate in Nutritional and Exercise Sciences at Arizona State University San Diego, California"

CBD FOR profit arm of wholistic research

"Evidence-based medicine is increasingly the primary way in which individuals are receiving care and support. Advocates for the approach (Sackets et al 1996) defined evidence-based medicine as: "

Camille, "The reason I wanted to include ethnographic research was to document the organic evolution of Apollo and the PHE including successes, mistakes, progress, setbacks, and other trivial and/or monumental aspects of what we are doing. I would like to have this anthropological history be of use to us as part of our learning process moving forward; however, it may also be something we would want to share with others via a publication or blog post. Due to the latter, we should have an approved IRB protocol for conducting this work as it fits under the "field work" type of research. "

"prof m.c. schraefel, phd,fbcs, ceng, cscs (lower case deliberate). Professor of Computer Science and Human Performance, Fellow, british computer society, Research Chair, Royal Academy of Engineering, Chartered Engineer. Head, Agents Interaction and Complexity Group And now a wee bit more: Deputy Head of Department, Research, and current REF champion (for those in the UK) for CS."

This YouTube Edition should work! Here is the 'on the fly' video of our encounter with Master Lu. Jan wore the gut monitor for the short session in Oceanside. She followed up with a much longer (1 hour) session with Master Lu two days later. She was able to walk without a cane for the first time during those sessions. Subsequently she has been able to walk (in PT) barefoot without a cane.

I'll be posting some video of Janice walking shortly after seeing Master Lui (soon). ~ Dennis