Posts
Friday, March 4, 2011
Overlapping Pain Conditions: Women in Pain Need More
- Women are treated less aggressively than men for pain and their reports of pain are often taken less seriously by healthcare professionals than are men's.
- Health care professionals are more likely to dismiss women's pain reports as emotional, psychological, or oversensitive and therefore not "real," leading to women's more frequent mental health diagnoses.
- These conditions result in a staggering financial burden, estimated at $80 billion a year in direct and indirect health care costs.
- The funds allocated to researching these conditions through the National Institutes of Health are woefully inadequate, at just $1.33 per year for every affected woman.
Pain in the Workplace | NAIDW
"I tell you, they're not listening"
Doctors Need to Know -- Write Letters to Doctors This Week!
The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.
These include:
•National Institutes of Health announcement of their retrovirus findings.
•Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.
•National Cancer Institute announcement of the original study, with Whittemore Peterson Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.
•List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.
The campaign was organized by PANDORA and CFS Solutions of West Michigan. In January 2011, MCWPA did a patient survey and participating in this project was in the top three choices. Patients were given suggestions and instructions in the Patient Discussion board.
http://mcwpa.org/2011/03/doctors-need-to-know/
Overlapping Pain Conditions: Women in Pain Need More
Happy Anniversary to me!
Thursday, March 3, 2011
Chronix Biomedical and Hemispherx announce joint filing for a patent on a blood
blood test for CFS based on changes to DNA. Press release:
News & Resources
www.chronixbiomedical.com
PACE trial results are out: ME is caused by an oncogenic virus
Can you imagine cancer away? - CNN.com
"There is something so biologically implausible that your attitude is going to cure a disease," says Angell, a senior lecturer in social medicine at Harvard Medical School. "There's a tremendous arrogance to imagine that your mind is all that powerful."
* * *
Here's to all the PWCs who have been told they can cure themselves by thinking happy thoughts.
When I was in denial about the disease, I got sicker. Telling myself that I was going to go to the office and be capable of putting in a full day's work didn't make it possible. At the end, it was almost impossible to even get to the office, much less accomplish anything while I was there, no matter how much I told myself that I could power through the problem.
PATIENTS THINK THAT DOCTORS STAND IN THE WAY
PATIENTS THINK THAT DOCTORS STAND IN THE WAY OF THEIR RECEIVING THE BEST TREATMENT AND CARE
SAYS A GLOBAL SURVEY OF 2,500 PATIENT GROUPS
(INCLUDING ALMOST 2,000 GROUPS FROM WESTERN AND EASTERN EUROPE)
For sample pages of the report go to http://bit.ly/i9GSD6
WEBSITE: http://www.patient-view.com
A 400-page report, What do patients think of doctors?, published in early-March 2011 by UK research organisation PatientView, finds that over half (53%) of the 2,500 respondent patient groups think patients believe doctors are standing in the way of their receipt of the correct diagnosis, treatment and and/or support—and are making patients 'fight the system' to obtain the care they need.
The situation is at its worst in five countries—Canada, Germany, Italy, New Zealand and the UK—where 60% or more of patient groups say that health professionals need to improve their relationships with patients by not making patients fight the system for their medical needs. 70% of patient groups representing the interests of patients with gastrointestinal problems, 60% representing the interests of patients with multiple sclerosis, and 60% rare diseases, feel that health professionals need to stop forcing patients to 'fight the system' to get the care they need.
Poor doctor-patient relationships have a negative effect on patient health
What do patients think of doctors? focuses on the current state of doctor-patient relationships, and offers numerous insights into how they can be improved. The report finds that less than a third of groups representing patients believe GPs and consultants remain traditional and patriarchal in their attitudes to patients. On the other hand, only 15% believe that doctors treat patients as equals (and act on that belief)—the rest believe that the situation varies from doctor to doctor, or that doctors may intend to take a partnering role, but fail to live up to it. Relationships between doctors and patients are undoubtedly in need of considerable improvement, especially in some of the less well-performing countries [see charts in sample pages at weblink above].
The state of doctor-patient relations has an important bearing on how well patients respond to treatment. In the report, patient groups are quoted as saying that poor doctor-patient relationships prevent patients from coming forward for medical treatment and care—even when treatment and care is needed.
Doctors need to listen more to the patient
When asked what single intervention would most improve doctor-patient relationships, the groups cite "enhancing the communication-and-understanding skills of the healthcare professional" as their main choice, second only to "the provision of treatment and care that improves quality of life". In Australia, Italy, New Zealand and the UK, improving doctors' communication-and-understanding skills is ranked first, as the most important way of improving doctor-patient relations. Groups representing the interests of patients with cancer and HIV/AIDS also see such a development as the favoured way of improving doctor-patient relations among the patients in their disease specialties.
About the survey
What do patients think of doctors? is based on the results of a November 2010 PatientView survey of 2,500 patient groups from around the world. The survey asked the respondent groups what they think of current doctor-patient relationships, and how they believe those relationships might be improved.
The report covers most subject areas in which patients would like doctor-patient relations to be improved, including: l Access to health professionals l Access and choice during diagnosis and treatment l Patient information provided by health professionals l Doctor-patient communication l Gaining patient trust l Respecting patients' valuable time l Accountability of health professionals l Improving prevention practices l Which single action do patients want from government and payers to improve doctor-patient relationships? l Which pharmaceutical companies are having a positive effect on doctor-patient relationships? l Why pharma can have a negative impact on doctor-patient relationships.
The report analyses doctor-patient relations in 11 countries and one region of the world: Australia [number of completed responses = 60]; Canada [138]; Eastern Europe [105]; France [80]; Germany [100]; Italy [110]; the Netherlands [30]; New Zealand [55]; Spain [80]; Sweden [56]; the UK [566]; and the USA [292].
Lydia E. Neilson, M.S.M. , Founder
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Wednesday, March 2, 2011
What's in a name?
Tuesday, March 1, 2011
John Falk: Chronic Fatigue Syndrome and Psychotherapy
"Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds," read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome (CFS) ranked third on Yahoo's 'Trending Now' list. For the misinformed reader it's likely these headlines translated that CFS is all in your head.
Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure.
X Rx: The Next Step
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. DeFreitas
Doctors Need to Know -- write to local doctors with ME/CFS info
Starting March 1, ME/CFS patients are educating physicians around the world of retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves.
The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.
Read the website for further instructions.