AUGUSTA, Ga.(WJBF) -- She was a law professor and Dean at the University of California-Davis Law School until a strange illness left her incapacitated.
Toni Bernhard writing in Psychology Today about trying to get her doctors to stop using the phrase "chronic fatigue" because she says people who are "overworked or over-stressed can recover with some good sleep."
But Chronic Fatigue -Syndrome- is a debilitating illness. You don't recover. It can take your career, your hobbies... even your relationships.
CFS, also known as Myalgic Encephalomyelitis (ME), is a mysterious and debilitating illness that strikes suddenly... and robs people of the joy of life.
It's gone by many names since the 1930's, Atypical Polio, Icelandic Disease, Royal Free Hospital Disease, ME, and most recently, Chronic Fatigue Syndrome- a name that has inflicted its own sort of perceptual harm. Take a look at this:
- "The treatment of today's ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written on day, we will all be ashamed of ourselves."
And that's from a Norwegian doctor who's a professor of Pediatrics and an advisor to the World Health Organization.
Candice Petrea: "You feel like your body's just weighted down with concrete anchors. You can't move. You don't have any energy to do anything."
CFS is a systemic neuro-immune condition. researchers believe it may be triggered by a virus. That's true for Candice Petrea: at the end of 2015 blood tests showed she had Lyme Disease-- which had gone untreated for a decade.
"But doctors were telling me it was all in my head."
She suddenly got very sick and started having seizures. she couldn't get out of bed, couldn't sleep or eat- and dropped a lot of weight. Her search for answers led her to a specialist in Atlanta, where she travels for treatments every other week.
"So when I go to Atlanta I get nutrition IV's. Now I'm anemic so I'm getting iron infusions and then all the supplements. I'm on over 40+ supplements and prescriptions a day, most being supplements, for my heart muscles, my whole body muscles, my cognitive function, mood, hormonal, my thyroid is off. I mean it's literally wreaked havoc on my whole body. You have to be your own advocate, you have Google, do your research. There's a symptom checker on lymedisease.org, if you want o see a doctor ILADS.org, put your zip code in, closest to us is Atlanta and Charleston."
Jennie: "And being your own health advocate does involve a lot of research. As Candice was saying, you have to Google, you have to search. For many with CFS, it's easier to do something at a computer screen. They can learn a lot of information, they can network. On this site, The Solve ME/CFS Initiative, you'll find a place where patients post their own stories. One of those is from a woman in North Augusta named "Marcie M."
Marcie Myers: "It's thought that in excess of one million people in the US have CFS/ME, 17 million worldwide is the best statistical guess right now."
Marcie shares the frustration of so many others: finding a doctor who understands CFS, much less treats it. and we were unsuccessful finding a local doctor to discuss CFS, even at the medical college.
Marcie:"There are physicians groups in Augusta that will not see a patient if they have a diagnosis of CFS." ... come to find out it's not being taught in medical universities yet."
And that's one thing a group of filmmakers wants to change. After the success of the documentary, "UNREST", Jennifer Brea and her team are working to bring the film to medical schools. They hope it will end the stigma and inspire a new generation of doctors to find a cure.
*********************************Wednesday, Feb. 7th: Promo for CFS Special ReportMonday, Feb. 5th: Meet Marcie, a patient and advocate for research dollars going to CFS.
Chronic Fatigue Syndrome is a mysterious and debilitating illness that strikes suddenly. For many years, a viewer named Marcie has emailed me often to try to raise awareness about an illness that is not recognized by mainstream medical professionals. It seemed so far-fetched... I had three babies under age 3, and I worked at WJBF fulltime-- I mean, I was tired for years! And that is one of the biggest hurdles: the name, Chronic Fatigue Syndrome, "invokes its own perpetual self-harm," as one blogger put it, because it sounds more like complaining, than a condition.
But CFS is another kind of tired... one that a good night's sleep or a lazy afternoon won't cure.
Marcie was 38 when she was diagnosed. She had a child, a husband, and a big job: she was a Nurse Manager in charge of care for 800 inmates in the SC Department of Corrections. The onset was sudden and within 5 years she had to give up her career... and her husband left her, she says, "because he couldn't deal with her severe illness."
Marcie says any stress-- physical, cognitive or emotional-- may "crash her" and leave her in bed for 3 days. She's has a low-grade fever for 20 years now, debilitating fatigue, and widespread pain. And doctors don't know why.
"I will be 60 years old soon and was knocked down in the prime of my life and lost everything I had then, including my self-respect, due to doctors, friends and family not understanding the depth of my physical symptoms."
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