Founder of Health Rising and Phoenix Rising
“Then she looked at me and said, ‘It's chronic fatigue syndrome [CFS], and I think you also have active Epstein-Barr virus [the virus that causes mononucleosis].’”
Neurology Now sounds like it's targeted, well, to neurologists - and that's a good thing. They need some educating....
It highlights the IOM report - what a ace in the hole that has been....We are definitely getting somewhere. In the last week or so we have had three excellent articles published - in the Altantic Monthly, the Washington Post and now Neurology Now...
It starts out with a woman for whom 50 pages of tests found nothing but when she went to Sue Levine - she found an active EBV infection....
Check this out regarding MS
I was tested for MS - thankfully didn't have it.Dr. Berger reviewed the medical histories of thousands of people who were ultimately diagnosed with multiple sclerosis (MS) and found that one out of three was first diagnosed with CFS or general fatigue in the two to three years before they developed clinical MS. He believes that finding should serve as a warning to doctors against jumping to conclusions if they can't find an immediate organic cause for a patient's fatigue.
And how about this:
This is an article clearly aimed at neurologists - they cover the major symptoms - correctlyDr. Sabin understands the skepticism. For many years, he referred to himself as a “CFS agnostic,” but after decades of seeing patients and hearing similar stories of sudden symptoms, he is now convinced that the condition is real and devastating.
See the entire article here- http://journals.lww.com/neurologynow/Fulltext/2015/11050/Beyond_Tired__Is_chronic_fatigue_syndrome_a_real.31.aspx
October/November 2015 - Volume 11 - Issue 5 - p 60–63
doi: 10.1097/01.NNN.0000472913.82545.7a Departments: Eye on Therapy
Beyond Tired: Is chronic fatigue syndrome a real medical condition? Yes, according to a report from the Institute of Medicine, which urges physicians to treat it accordingly.
Gabriella Marinaccio, a 28-year-old teacher from Norwalk, CT, says she was forever on the go. “Rush, rush, rush. Undergraduate degree, then master's, got married, started my doctorate, bought a house, bing, bam, boom!” She was a full-time teacher of English as a second language (ESL) while working on her doctorate, and still found time to socialize with her husband and their many friends. Then, in January 2014, her busy but idyllic life hit a large and unexpected speed bump.
“I woke up and thought I had the flu. I was achy and sick for about a week,” she recalls. When the severe diarrhea that accompanied the illness didn't go away, her primary care doctor ordered a battery of tests, but couldn't find anything wrong. She referred Marinaccio to a gastroenterologist, who ordered more blood work and did an endoscopy and colonoscopy, again without identifying an underlying cause. Finally, the gastroenterologist prescribed a course of antibiotics, and eventually her stomach settled down and the diarrhea stopped.
Then, in late September, Marinaccio tested positive for the flu, which was followed by a series of sinus, ear, and other minor viral infections—plus swollen lymph nodes in her neck, a sore throat, and achy muscles. By the end of October she was so unwell that it became impossible for her to continue teaching. By early November she had stopped working.
She saw several more doctors, including one specializing in infectious diseases and another in allergies and immunology. “They said there was nothing wrong with me. They did 50 pages of blood work and said everything was fine.”
But an appointment with Susan Levine, MD, an infectious disease and allergy and immunology specialist in New York City, finally provided some answers. Dr. Levine reviewed Marinaccio's blood work and tests, examined her, and spent an hour listening to her. “Then she looked at me and said, ‘It's chronic fatigue syndrome [CFS], and I think you also have active Epstein-Barr virus [the virus that causes mononucleosis].’” Dr. Levine drew blood to test for the virus and called one week later to confirm the diagnosis.
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2. Exhaustion After Exertion
People who have CFS describe the second core symptom, post-exertional malaise—a serious exacerbation of symptoms after mental, emotional, or physical exertion that may last anywhere from 24 hours to months—as a “crash” or “collapse.” “Their fatigue worsens with even minimal physical or mental exertion—sometimes only 10 minutes,” says Dr. Levine. “Other symptoms, such as cognitive abnormalities and sore throats and/or lymph node swelling, may flare up as well.”
Each person has a different fatigue threshold. For Marinaccio, a walk around the block is like running miles for an ordinary person; if she pushes herself beyond that point, she is affected for days.
4. Cognitive Impairment
The IOM panel noted that many people who have CFS report that they can't process information as quickly as they used to, and that they lack focus and are more forgetful. “The neurocognitive symptoms are slowed processing of new information, short-term memory problems, and diminished attentiveness, all of which worsen following exertion,” says Dr. Levine. This dulling of mental faculties can be as debilitating as the physical fatigue, but it is equally difficult to measure clinically, she says. And neurocognitive testing for the symptoms may not be covered by insurance.
Marinaccio, who used to love to read and discuss books, now can only concentrate long enough to listen to audio books in short bursts. Because of this, she has had to put her doctorate on hold for now.
A MIXED PROGNOSIS
Some people with CFS are profoundly disabled, while others recover, says Dr. Sabin. In general, though, symptoms can persist for years, and most people never regain their original level of health or functioning.
Marinaccio cried when she was diagnosed with CFS, but Dr. Levine reassured her that because it was caught so early, she has a better chance of improving than most. “I think it's fair to say that most patients improve about 30 to 50 percent. They do better if they are treated, stop working, or both within 18 months of becoming ill. The outcomes are so variable, and no one has done long-term studies [on the condition].”'