Saturday, June 25, 2011

Invisible Illness Awareness Week invisibleillnessweek.com

 
invisibleillnessweek.com
What is Invisible Illness Week all about? This year our theme is DEEP BREATH, START FRESH. How can you "live what you've learned" about living with a chronic illness? How can you encourage someone else to start fresh?

Thursday, June 23, 2011

Dangers of research into chronic fatigue syndrome

 
"a small group of individuals. Some of their arguments are sound, but the tone, the errors and the overall message have caused a lot of damage. They influenced other patients and unless you have the determination to respond to the every attack, the people reading the internet 'nasties' are simply not aware that they have been misled."
 
* * *
Ellen Goudsmit makes a good point -- those of you who are inclined to write over-the-top, emotional responses do damage to The Cause.  That sort of thing adds to the notion that we're just a bunch of hysterical women with mental problems rather than a physical ailment.
 
As grandma always told you, "if you can't say something nice, say nothing at all".

Wednesday, June 22, 2011

Living with CFS/ME

 
"To ensure the illness was not psychological, I worked extensively with a psychotherapist. Rather than finding evidence of emotional issues that could cause my symptoms, the therapy suggested the opposite—that, given how sick I am, I have surprisingly good mental health. It delivered no improvement in my health."

Tuesday, June 21, 2011

Man Robs Bank...for Health Care?

 
 

"Insurance systems ARE socialized systems, except they don't cover everyone and allow a corporation - an entity that neither receives nor provides the medical treatment - to skim a profit off the top. In what sort of twisted mind is that the rational way to provide medical care? ... Health care is not cable TV and cannot be solved with these over-simplified market solutions. Anyone who tells you otherwise is a liar, a fraud, or a charlatan - and perhaps a moron."

World Facts and Statistics on Disabilities and Disability Issues

 
 

Monday, June 20, 2011

CFS on Today Show

 
 
The interviewer asked if the stigma is gone and Dr. Snyderman did admit that they now think there's a virus involved.  "It takes doctors really listening"
 
Step in the right direction.
 
Click below the video panel for the transcript.

CFS to get Web TV Presence

 

June 08, 2011 05:00 PM Eastern Daylight Time 

 Chronic Fatigue Syndrome to Get Web Television Presence

WASHINGTON--(BUSINESS WIRE)--A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as "the living death" disease. The disease also is known by its old name – and the one favored by many patients – myalgic encephalomyelitis.

"In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS"

 The program is called "M.E./CFS Alert" and can be accessed on the You Tube Channel LIMFIL88. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program "White House Chronicle."

The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of "White House Chronicle" and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.

"This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds," Waroff said.

An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.

Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.

The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.

"In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS," King said.

The first program is an interview with pioneering M.E./CFS doctor Derek Enlander.

Contacts

White House Media LLC
Llewellyn King, 202-662-9731
lking@kingpublishing.com

Lydia
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
 

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011

For details on agendas and registration, please visit:  

Member of www.iacfsme.org