Saturday, November 17, 2007

If the Times says it...

(When I first became ill with this disease after an energetic life, a busy career, I went from doctor to doctor, when able to drag myself to an office, terrified of the symptoms and hoping for help. For the most part, I received redicule instead. I was told:

1)I was crazy
2)I just needed a 'little rest' and it would go away
3)I must REALLY be depressed etc.

One doctor , a neurologist, ridiculed me and laughed at me to my face. An ENT I went to for inner ear testing, looked at the results, which said my inner ear was fine, and told me quite solemnly that I had a 'neurotic depression'. I told him I was a clinical psychologist who used to run treatment units and I'd never seen depression manifest this way and that this was no depression. He gave me a sorrowful look and said 'we never see it in ourselves'. Sigh.

The CDC said we were depressed and the world believed it, treating us this way. It also diverted research funds as did NIH until an investigative reporter discovered these diversions, a committee in Washington investigated, and things began to change. The CDC now has proclamied the illness as 'real'. Oh thank you , CDC, but no real funds go into research yet--more so into campaign ads.

We are truly the 'forgotten illness')


Please read the following article from The Times:

Frontline Report:
Chronic Fatigue No Longer Seen as 'Yuppie Flu'


By DAVID TULLER
Published: July 17, 2007


For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.

But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes. The centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.

“People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the C.D.C., who helped expose the centers’ misuse of chronic fatigue financing.

Finish this article at The New York Times Online/

4 comments:

Annie Wicking and Loman Austen said...

Thank you for sharing this with us. I had a friend who suffered from it and she was told by her doctor to have a bady as it would give her less time to think about herself.

Hope you are still keeping well, best wishes as always my dear friend.

Annie

Pris said...

A baby?? Oh my. Too many doctors to educate and too many who don't want to learn. Did you know that this illness isn't even taught yet in many medical school??

Anke said...

HI Pris, thanks for stopping by at my blog. I think I'm not the person you are looking for. AnkeM would fit but I never painted a painting with that title. I do mostly collage. I hope you have luck finding that person soon.
I just read about the suffering people with CFS have, it's a pitty that doc's are not taking their patients serious, I'm glad to hear though that there are some changes and it's accepted as a disease like other ones. Wish you all the best !
Greetings, Anke ;)

Pris said...

Hi Anke. Good to see you again and I left a note over on your blog.