Friday, May 22, 2009

Dr. Ralph on "Fatigue"

My Comment to the Enlander Blog regarding "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
 
* * *
I had a similar experience. 
 
Because I was divorced, doctors saw no need to search for a physical cause for my pain, and simply handed out useless anti-depressants (some of which made me violently ill).  Years later, a chiropractor took x-rays and found 3 fractured vertebrae.
 
Preliminary to a clinical trial I was trying to get into, I was given a C-Reactive Protein test, which would determine if I had any infection or inflammation.  Again, years after I started to complain of feeling unwell, and having everything attributed to being divorced, I finally had proof that my marital status had nothing to do with it ... the CRP test results were described to me as "off the charts".
 
None of the doctors cared to hear that I had similar symptoms before/during/after marriage.  They just glommed onto the word "divorced" as an excuse for everything and refused to consider any other possibilities.  Now I'll never work again (and I can't get alimony) because the doctors didn't look beyond the easiest answer.  That I was giving them information that proved it was the wrong answer was immaterial to them -- the goal was to get me drugged into submission, not to cure me.

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