Wednesday, June 17, 2009

Defining "Fatigue"

http://tinyurl.com/p9rnu6

I am a retired diagnostic radiographer. I became a victim of the word
"fatigue" in 1996 when a rheumatologist decided that the outcome of my
poly-arthralgic pain that caused me significant sleep deprivation was in
fact a description of "fatigue".

I was subsequently diagnosed with post-viral fatigue syndrome.

Eight bedbound years later and a move to a new family doctor and I was
reassessed.

I discovered that I had got an inflammatory process going on all along yet because I was diagnosed with a "fatigue" based condition I didn't get any treatment relevant to my underlying disease.

To functional psychiatry, "fatigue" is caused by a mental health disorder
treatable and curable with CBT and Graded Exercise.

To the rest of medicine "fatigue" is a function of systemic disease.

To patients with ME, "fatigue" is a pure insult of a word and does not even
begin to describe all the symptoms that cause long term debilitation and
suffering.

But what do you do when the Government and the healthcare system of your
country (in relation to CFS/ME) use the psychosomatic meaning of the word
"fatigue"?

This is the way things are both here in the UK and around the world.

I have discovered over the last 15 years of campaigning that "fatigue" is a
medically broken word - a double entendre of a word that has two totally
different meanings.

And now that broken double entendre of a word is being used to name a
medical journal.

If the people behind this journal do not understand that the word "fatigue"
was hijacked 20 years ago and that patients are furious that "fatigue" is
now being further welded to Myalgic Encephalomyelitis by the use of this
word as the title of an ME friendly medical journal then there is in my view
no hope for patients with ME.

You should all be changing the language to accurately describe a disease
instead of leaning on the crutch of a broken word - a medical double
entendre.

You should all be listening to and supporting the knowledgeable patients you
all claim to be interested in helping.

And over these last 20 years all of you should have been confounding the
views of Professor Simon Wessely at every opportunity instead of letting him
and his colleagues own the word "fatigue" in relation to CFS and ME.

Spending the last 20 years turning the other cheek has done absolutely none
of us any good at all.

The word "fatigue" ruined my life and it is ruining many many thousands of
others due to the way this word can be and is being deliberately perverted.

I am now 95% of the way to a re-diagnosis of Behçet's disease - a condition
that has many similarities with Myalgic Encephalomyelitis.

Thankfully, Behçet's disease appears in medical journals with names specific
to neurology, immunology ophthalmology, rheumatology and dermatology;
journals that cover grown-up areas of symptom causation using unbroken words
or words that medically have no double meanings - double meanings exploited
by functional psychiatry for that precise reason.

Sincerely,

Stephen Ralph DCR(D) Retired. www.meactionuk.org.uk
 

* * *
Like Dr. Ralph, the word "fatigue" has been the bane of my existence.  Once you say that, everyone leaps to the conclusion you're simply depressed and ignores all the other symptoms that point away from depression.
 
Like Dr. Ralph, my infection/inflammation went completely untreated while I was plied with useless psychotropic drugs and ordered to stop faking, just go back to work.  Obviously, an infection can't be faked, it's not a figment of a hypochondriac's imagination, and someone with an infection belongs in a hospital bed not a workplace.
 
Eventually, I got a C-Reactive Protein test, which shows infection/inflammation, which was "off the charts", so high the doctor was convinced it had to be lab error until the re-test was even higher.  THAT'S how sick I really was, while being verbally abused for being "just lazy" and lying about any symptom that didn't fit in with the doctor's desired diagnosis of "all in your head".
 
By the time I got the proof that I really was physically sick, it was too late -- the infection/inflammation had caused permanent physical damage.  Maybe if every CFS patient would institute a malpractice lawsuit against doctors whose "treatment" leaves them in worse condition, the medical profession would take notice that CFS has biological underpinnings.  But as long as they get away with it, they'll continue to dole out anti-depressants and verbal abuse instead of looking for the real cause for your symptoms.  Even the symptoms that prove it's not depression are dismissed because for too many doctors, "fatigue" is merely a synonym for depression and not something worth a full work-up. 




1 comment:

Charlene said...

Stephen, I have Behcet's and Sjogren and would like to e-mail you privately, if you will send me your e-mail address. Another BDer, USA