Mystery Malady

Mystery Malady
Daytona Beach News-Journal, Florida
March 31, 2008

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Chronic fatigue syndrome difficult to diagnose
By MARGIE SCHLAGETER
Staff Writer

In medical school, Melody Hanger would greet each new day with energy and
enthusiasm, even though she had been up for 24 hours straight.

The year was 1981, and she was in classes at the University of South Florida
and on call every other night at Tampa General Hospital through her surgical
and obstetrics/gynecology residencies. Adrenaline and catnaps kept her
refreshed.

Today the 43-year-old physician concedes, "There's never a day I feel like
getting out of bed." She wakes up late after spending 12-13 hours in bed but
almost never feels rested.

"In the fall of 1999 my life was turned upside down," says Hanger. That's
when her suspicions were confirmed; she was diagnosed with chronic fatigue
syndrome.

Now, the medical school diploma that she received at the age of 25 and once
proudly displayed in her office is packed away among other things no longer
relevant, somewhere in the Ormond Beach home she shares with her mother.

Chronic fatigue syndrome is disabling and "one of the most common chronic
illnesses of our time," according to Dorothy Wall in "An Introduction to
Chronic Fatigue Syndrome." Its symptoms include incapacitating fatigue and
post-exertion malaise, impaired memory or concentration, flu-like aching,
headaches, muscle and joint pain, sensitivities to noise and light and
others that can trap the ill person in a web of debilitating symptoms.

Dr. Luckey Dunn of Daytona Beach, regional campus dean for Florida State
University College of Medicine, noted that chronic fatigue syndrome has
overlapping symptoms with fibromyalgia -- and other conditions -- that make
it difficult to diagnose. From a clinical standpoint, the physician has to
be primarily concerned with treating the symptoms, Dunn said.

Dr. Michael Kohen, a rheumatologist in Daytona Beach, said that in his field
chronic fatigue is the most misunderstood condition, adding that many
doctors don't recognize it. Kohen said he treats many patients with
fibromyalgia, the term he uses to encompass those conditions that may
include chronic fatigue syndrome.

According to the Arthritis Foundation, research has established that when
"deep" sleep is disrupted, fibromyalgia symptoms are aggravated. The fatigue
and other common symptoms reinforce the thinking that chronic fatigue and
fibromyalgia are the same.

The diagnosis, however, can be tricky. Kohen begins by ruling out an
underlying medical condition before doing various tests to pinpoint the
diagnosis.

Hanger takes 40 different natural remedies for her symptoms, a treatment
recommended by her physician, Dr. R.H. Keller, of Hollywood, Fla.

After completing medical school, Hanger did her family practice residency at
Halifax Medical Center and eventually accepted a position as a primary care
physician with the Veteran's Administration Clinic here. In 1997 she began
to be unusually tired at work and would rest during her lunch hour and again
before she'd drive home. She had flu-like symptoms and recurring infections,
missing a lot of work. Like so many others dealing with chronic fatigue
syndrome, she was embarrassed by her symptoms and inability to pinpoint the
illness, and coped by isolating herself.

Hanger began to experience problems with her short term memory as well, and
would constantly double and triple check everything she did, which only
added to her stress. Eventually she realized she could no longer work.

In retrospect, she says, her illness was most likely triggered by chemical
sensitivities -- the VA clinic had mold issues and was declared a "sick
building." When the facility was cleaned with strong chemicals, she suffered
dizziness, nausea, nose bleeds and her nails turned blue. One theory
involving the illness is that a person may have a genetic predisposition,
which is activated by one of many triggers, Hanger said. She believes the
chemicals in the cleaners were that trigger.

Hanger has maintained her medical license, but due to her illness she can no
longer practice medicine.

"I was always high functioning, loved studying, loved working, loved being a
doctor," she said. Now she's lost her identity -- and the profession that
had been her focus since childhood.

margie.schlageter@news-jrnl.com

Letter in reply by Dr John Greensmith of ME Freeforall

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.

If anyone has a letter to contribute, the e-mail address is
letters@news-jrnl.com

The illness from which Dr Melody Hanger is suffering is not so mysterious as
the title of the article about her (*Mystery Malady, Daytona Beach
News-Journal, Florida, USA, 31 March 2008*) suggests.

Her principal symptoms of overwhelming lassitude, unrefreshed by sleep; slow
recovery after minuscule effort ("post-exertional malaise"); muscle pain and
cognitive dysfunction all point to M.E. (*Myalgic Encephalomyelits*), named
by the late Dr Melvin Ramsay in 1956 (*Myalgic*-, relating to the muscles, *
Encephalo*-, the brain and spinal cord and -*itis*, meaning inflammation),
for which there is abundant research evidence; which has been recognised by
the World Health Organisation (WHO), since 1969, as a neurological illness
and from which millions of people around the Globe also suffer.

It is the imprecision of the diagnostic label *Chronic Fatigue Syndrome*,
which is so indiscriminate -- think about it for a moment and see whether
you agree -- that it could apply to any patient in the recovery stage after
any illness or surgery, which is holding back research and delaying a cure
for M.E.

Since M.E. sufferers do not have the symptoms for which the management
techniques of Cognitive Behaviour therapy (CBT) and Graded Exercise Therapy
(GET) are intended, there is no lasting benefit, without remission, from CBT
and some people are made irrecoverably worse by GET. Yet this remains the
recommended approach and all research funding is directed this way.

Until M.E. is removed from the wrong diagnostic box and funding is diverted
into promising biomedical research, Dr Hanger and millions like her, will
remain ill.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org