Elizabeth Levine Wandelmaieris is Co-Director of the DES Third Generation Network
The inspiring, true story of how one family came to love and accept their child with multiple disabilities. Rose was born eight weeks premature to Elizabeth, a DES daughter.
Rose’s cerebral palsy and other disabilities dramatically altered life for this family. Rose’s Colors is the return to a challenging but good life.
Elizabeth Levine Wandelmaieris is Co-Director of the DES Third Generation Network.
DES DiEthylStilbestrol Resources
Make all medical research results public
A new campaign All trials registered, all results reported – supported by the Medical Research Council (publicly funded organisation in the UK dedicated to improving human health) – calls for the results of all clinical trials to be made public.
Sir Iain Chalmers, Coordinator of the James Lind Initiative, has strong words on researchers who hide trial results and ends his post by saying: “ If action is not taken urgently by research funders and regulators, information on what was done and what was found in trials could be lost forever, leading to bad treatment decisions, unnecessary repetition of trials, and missed opportunities for good medical practice. ”
Read Make all research results public, insight, 4 April 2013.
#AllTrials website and donation site.
Unexpected results in a randomized dietary trial to reduce phthalate and bisphenol A exposures
A study, published by lead author Dr. Sheela Sathyanarayana, addresses how people may be unable to escape exposure to endocrine disruptors as they are appearing in their diets, even when their individual meals were organic in nature and the foods were prepared, cooked and stored in non-plastic containers. The study also reinforces the notion that the most vulnerable population are our children.
Read Even Eating Organic Foods Can Result In BPA, Phthalate Exposure by Alan McStravick
Diet is a primary source of exposure for high-molecular-weight phthalates and bisphenol A (BPA), but little is known about the efficacy of various interventions to reduce exposures. We conducted a randomized trial with 10 families to test the efficacy of a 5-day complete dietary replacement (Arm 1; n=21) versus written recommendations to reduce phthalate and BPA exposures (Arm 2; n=19). We measured phthalate and BPA concentrations in urine samples at baseline, intervention, and post-intervention periods. We used Wilcoxon paired signed-rank tests to assess change in concentrations across time and multi-level mixed effects regression models to assess differences between Arms 1 and 2. Urinary di(2-ethylhexyl) phthalate (DEHP) metabolite concentrations increased unexpectedly from a median of 283.7 nmol/g at baseline to 7027.5 nmol/g during the intervention (P<0.0001) among Arm 1 participants, and no significant changes were observed for Arm 2 participants. We observed a statistically significant increase in total BPA concentration between baseline and intervention periods in Arm 1 but no significant changes in Arm 2. Arm 1 food ingredient testing for DEHP revealed concentrations of 21,400 ng/g in ground coriander and 673 ng/g in milk. Food contamination with DEHP led to unexpected increases in urinary phthalate concentrations in a trial intended to minimize exposure. In the absence of regulation to reduce phthalate and BPA concentrations in food production, it may be difficult to develop effective interventions that are feasible in the general population. An estimate of DEHP daily intake for children in the dietary replacement Arm was above the US Environmental Protection Agency oral reference dose and the European Food Safety Authority’s tolerable daily intake, suggesting that food contamination can be a major source of DEHP exposure.
Dr. Sheela Sathyanarayana study: Unexpected results in a randomized dietary trial to reduce phthalate and bisphenol A exposures, Journal of Exposure Science and Environmental Epidemiology, July/August 2013.
Widespread Failure among Doctors to follow Clinical Guidelines
A report out this week, submitted to a medical journal but not yet published, discusses the findings of a study analysing the treatment and results of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network…
Read Widespread Flaws Found in Ovarian Cancer Treatment
by Denise Grrady – 326 commets
Read Inadequate Treatment of Ovarian Cancer
The NewYorkTimes – 132 comments
Read The politics of cancer
by Susan Estrich – 39 comments
” Pour diverses raisons, comme le passé médical, l’âge toujours plus tardif auquel les femmes ont leur premier enfant, le mode de vie ou l’alimentation, les troubles de la fertilité sont plus fréquents qu’avant et représentent toujours une véritable angoisse pour les couples concernés. Blandine Maire est allée à la rencontre de quatre couples qui ne parviennent pas à avoir un bébé naturellement. Pendant plusieurs mois, elle les a suivis dans leur combat pour donner la vie. Entre doutes, espoirs, déceptions et intenses moments de joie, mais avec pudeur et honnêteté, tous ont accepté de partager leur aventure intime au quotidien. ”
Diffusion: France4tv – Auteur: Marion Desquenne
Documentaire 90 mn – Tous Publics
How Drug Companies Mislead Doctors and Harm Patients
Last February 18th, 2013, at Town Hall Seattle, Dr. Ben Goldacre talked about his book, Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients, in which he discusses the influence of the pharmaceutical industry on the global healthcare system and argues that pharmaceutical companies hide negative studies and use questionable testing and intensive lobbying to get what they want, regardless of whether the drugs they produce are good for patients. Watch the video (1 hour, 26 minutes) .
More about Ben Goldacre
DES Videos in English – Diethylstilboestrol YT video channel.
Penny Oliver custom paintings for the medical professional
” My name is Penny Oliver and I am committed to creating artwork that will inspire and reinvigorate you in your practice of medicine.
By interpreting and translating anatomic, histologic and diagnostic images, I seek to create art that is both beautiful to the layperson and meaningful to the medical professional.
Contact me to see how your work and passion can be transformed into a stunning piece of original art. ”
The Toxic Substances Control Act is in need of an update
The USA need a new toxic chemical law–and fast.
Join Moms Clean Air Force in Telling the Senate to Pass Stronger Toxic Chemical Standards and keep the air within our homes safe and clean for our children.
Pass the Safe Chemicals Act
” Recently, a team of researchers from Duke University and UC Berkeley found that 85% of couch cushions contain toxic or untested chemicals. For instance, 41% of couch cushions contain chlorinated Tris, a carcinogenic flame retardant chemical.
That’s because the 35-year-old Toxic Substances Control Act allows hazardous or untested chemicals to be added to furniture and other household products without being tested for their health effects.
Right now, there are 80,000 chemicals on the market in the United States that are either known to be harmful or that haven’t been tested.
These dangerous chemicals migrate into the air inside and outside our homes–the air our families breathe every day–exposing us to harmful carcinogens.
The Toxic Substances Control Act is in need of an updated. I urge you to support stronger toxic chemical standards so that we may protect our families from dangerous, cancer-causing chemicals and preserve clean air within our homes. ”
TAKE ACTION and SEND YOUR MESSAGE
Fetal Engineering Very Dangerous Experiment
Science Daily post Dangerous Experiment in Fetal Engineering analyses Prenatal Dexamethasone for Congenital Adrenal Hyperplasia published in the Journal of Bioethical Inquiry using extensive Freedom of Information Act findings to detail an extremely troubling off-label medical intervention employed in the U.S. on pregnant women to intentionally engineer the development of their fetuses for sex normalization purposes.
2012 Study Abstract
Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research.
This is insane ! This shows NOTHING has been learned from the thalidomide and DES experiences.
Drug companies pay doctors £40m for travel and expenses
Drug companies are paying an estimated £40m a year to British doctors in service fees, flights, hotel and other travel expenses, according to the trade body that represents pharmaceutical companies.
Doctors have always denied that taking drug company money influences their judgement in any way about a medicine, but suspicions have lingered.
Read Drug companies pay doctors £40m for travel and expenses
by Sarah Boseley, The Guardian, april 2013.