Disease makes dubious doctor a believer

Reply to "Disease makes dubious doctor a belliever", Huntsville Times,
Alabama, 25 March 2008 (link below my signature).

e-mail address for anyone who has a letter in them is letters@htimes.com

Cheers
John
drjohngreensmith@mefreeforall.org


*HuntsviIIe Times Letters*.

It's a shame that some doctors have to have a chronically disabling illness,
like M.E. (*Myalgic Encephalomyelitis*) or Fibromyalgia, themselves (*Disease
makes dubious doctor a believer, Huntsville Times, 25 March 2008*), before
they believe it exists, despite all the evidence there is already.

It is also a shame that some doctors and nurses, who have M.E., deny it or
hide it away for fear of disbelief or ridicule from their fellow
professionals, thus going without any support or treatment; suffer,
invisibly, in silence, thereby appearing to reduce the number of those
affected; become unemployed and even contemplate suicide.

Hopefully, Dr Bryan Evan's conversion will not only encourage belief,
vicariously, without unnecessary suffering but also promote research to
understand the cause and provide a cure for these illnesses which have
devastated so many lives.

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

http://www.al.com/living/huntsvilletimes/index.ssf?/base/living/120643834717090.xml&coll=1

Disease makes dubious doctor a believer
Huntsville Times

Tuesday, March 25, 2008
By YVONNE BETOWT

Before suffering illness Bryan Evans wasn't sure CFS was real

Dr. Bryan Evans used to enjoy playing volleyball at the gym with friends a
couple times a week.

The Huntsville family practice physician often felt sluggish after seeing
between 30 to 40 patients a day at his southeast Huntsville office. But when
he stepped onto the volleyball court, the adrenaline rush restored his
energy.

"The only time I felt good was when I was playing volleyball, and I never
wanted to quit," he said.

But eventually that high began to wane as his body continued a downward
spiral. He suffered from excruciating muscle aches and pains, profuse
sweating and total exhaustion without exerting any energy, unexplained
weight loss and gain, skin rashes, headaches and a number of other
debilitating problems.

After countless tests and trips to several local specialists - an
oncologist, a cardiologist, rheumatologist, pulmonologist and an infectious
disease internist - with no definite diagnosis, Evans began to suspect he
had Chronic Fatigue Syndrome and/or fibromyalgia.

He was right about both.

Gradually, Evans was so tired and weak he could hardly get out of bed each
morning. After a shower, he had to return to bed for about 30 minutes to
muster enough energy to get dressed. He began cutting back his office hours,
thus reducing his workload - and his income.

He and his wife had divorced, leaving him in a state of turmoil, emotionally
and physically. Despite his vast knowledge of medicine, he was perplexed at
what seemed to be a phantom illness.

Finally, Dr. Dan Prince, a rheumatologist in Gadsden whose wife has
fibromyalgia, confirmed his suspicion.

"Initially I thought it was just a bad viral illness," said Evans, the
46-year-old father of two daughters. "I was just glad it had a name."

In 2002, he started having symptoms, but thought it was secondary stress. In
2004, it started affecting his work schedule. He was soon able to see only
10 patients a day.

Earlier this year Evans sent a letter to his patients informing them of his
"catastrophic" illnesses and situation, which he says, is in dire straights.
He may be headed for bankruptcy because of his inability to function as a
physician and is applying for disability.

He said he feels like he has flu-like symptoms "24 hours a day, seven days a
week. It never goes away."

Many things can trigger an attack of fibromyalgia or Chronic Fatigue
Syndrome, ranging from loud noises, to excessive light, smelling potent food
such as onions, or even the weather.

Before he began showing symptoms, like many doctors, Evans was a "doubting
Thomas" when his patients claimed to have Chronic Fatigue Syndrome or it's
closely related cousin, fibromyalgia. Two decades ago, some physicians
called CFS the "yuppie flu."

"I have never been a strong believer in Chronic Fatigue Syndrome in the
past," Evans said in hisletter, "but, after extensively researching the
subject, I have every sign and symptom pointing to this as my diagnosis."

Now he feels those same patients' pain - literally and figuratively.

"Yes, I've seen eyes roll," said Evans of some of his colleagues when they
learn about his diagnosis. "It's like you are talking about the tooth fairy.
I was probably more sympathetic than most doctors to patients with Chronic
Fatigue or fibromyalgia, but I have rolled my eyes when I've had patients
with them. But mostly it was because there is very little you can do to help
them."

One of the newest drugs with promise to help people suffering from
fibromyalgia is Lyrica, approved by the FDA last June. Time magazine called
it one of the top 10 medical breakthroughs of 2007.

But for Evans, neither Lyrica, nor any other drug, has helped the symptoms
that leave him aching, weak and exhausted.

"At various times, I tried several medications, none of which helped any of
my symptoms," Evans said. "Most made me feel worse, if anything."

CFS and fibromyalgia are so similar in their symptoms, some doctors believe
they may be one in the same, with different symptoms affecting people in
different ways.

The book "Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible
Illnesses" (Hunter House, 2001) was written by Dr. Katrina Berne, who was
diagnosed with CFS and fibromyalgia in 1985.

She says research shows the two diseases "overlap by as much as 75 percent."
She said the disorders "share common symptoms, demographics, sleep
physiology, and abnormalities in neurological, immune system, and endocrine
function."

Evans said no one is quite sure what causes CFS or fibromyalgia and there is
no known cure. No federal money is allocated for research either.

"It's not a glamorous illness so there is no money for research," said
Evans, a graduate of the University of North Carolina in 1983 and Wake
Forest Medical School in 1987. "Some people say be glad I don't have
Parkinson's, but I wish I did. At least they have money for research."

* * *

We've said it for years -- the only way to convince some people that CFS is real is for them to get it themselves.  They may not believe me that I'm sick-not-lazy, but when it hits closer to home, they know that they themselves are physically ill, not lazy or crazy.