12/26/2007
The USA's continued use of the ICD9's these past almost 17 years--while the
rest if the world has used the ICD10's and is almost ready to move to the
ICD11's--has only increased the confusion, where ME, and CFS (Fukada, et al)
are concerned....
What is needed the MOST right now is for everyone and all efforts to be
correct, straightened out, precise and clear.
That is, the terminology AND corresponding critierias and defintions used
must be properly aligned.
AND everyone needs to understand what is made-up, versus what is real.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
'CFS/ME 'is the Wessely Schools' psychosocial illness MODEL, which they
derived to help insurance companies deny patients claims.
-->It is NOT recognized by the WHO (World Health Organization).
'CFS' refers to the USA's also (b/n 1988-1994) made-up 'syndrome' based on
'fatigue .
NOTE: A 'syndrome' is a cluster of symptoms; not an illness or disease, in
the WHO vernacular.
-->It is classified under R53.82 (ill-defined, fatigue).
'ME/CFS' refers to the 2003 Canadian Criteria, which is really a 'blend' of
2 disparate things: ME, and CFS (Fukada, et al).
Confused persons managed, several years back, to combine them and now many
in the world mistakenly think this is correct.
It is NOT.
-->There is no mention of 'ME/CFS' in the WHO classifications.
'ME' is classified very differently from 'CFS' by the WHO (and since 1969!)
under G93.3, Neurogenic.
Neurogenic means it starts in the Brain acutely, i.e., suddenly.
It is an extremely debilitating and 'multi-systemic' illness, with a
well-defined 'symptom cluster'.
-->The G93.3 classification places it under Brain, CNS, Neurolgical...not
'under ill-defined, fatigue'.
**********This is a very important and serious distinction.**********
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is how ME starts:
"[The] prodromal phase is associated with a short onset or
triggering illness.
This onset illness usually takes the form of either, or any
combination of, the following
(a) an upper respiratory illness,
(b) a gastrointestinal upset,
(c) vertigo and
(d) a moderate to severe meningitic type headache.
The usual incubation period of the triggering illness is: 4-7
days.
The second and third phases of the illness are usually always
different in nature from the onset illness, and usually become apparent
within 1-4 weeks after the onset of the
infectious triggering illness
(1998 [Online])."
The initial damage results in a 'cascade of events throughout
the body', which results in a longterm multi-systemic illness.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If your illness did not start like this...if it did not start with a 'sudden onset viral event' that changed both your life and your health within less than 24 hours...if it did not first damage the brain, brain stem and CNS, and that initial damage then caused a 'cascade of events throughout the body', resulting in a very severe and debilitaitng illness...if you do not display the very specific 'symptom cluster' that goes with ME...then YOU DO NOT HAVE ME!!! (G93.3)
. It is beyond time for everyone to start using the correct terms, and to
understand and refer to their corresponding criterias and definitions.
. It is beyond time to correct all of the mistakes of recent years when
referring to ME, or to CFS (Fukada, et al) and to end all of the confusion
caused by indiscriminately mixing or blending them
together - as there is NO SCIENCE to support this!!
. There can be NO 'ME/CFS'. It is a manufactured product of recent years,
designed by ill-informed individuals/groups to give more credence to a
made-up 'syndrome' based on 'fatigue' (i.e., 'CFS', Fukada, et al).
Things could not be more off-track that they currently are:(
It is time to set things straight, and to keep them that way.
G93.3 and R53.82 are entirely different classifications, affecting different
bodily systems in different ways.
So says the worlds' pre-eminent health authority: the WHO (World Health
Organization).
And the USA needs to get it's act together and stop continuing to make
things up, and muck things up.
Most Sincerely,
LK Woodruff
lkw777@charter.net
* * *
This has been a problem for many years: doctors who don't understand that there is an infectious onset to CFS have been misdiagnosing cases of "chronic fatigue" as CFS. Research has been done, purporting to be CFS, on people who didn't have the infectious onset. They responded to anti-depressants because what they had was actually depression. Or they responded to blood pressure medication because what they really had was low blood pressure.
Dr. Montoya at Stanford has had remarkable success treating patients who had a viral onset with anti-viral medication.
It's time that everyone understood that if it started with a virus (as mine did), it's not depression and won't respond to anti-depressants or jollying/coaxing/threats. Telling me to "get counseling" as one judge did is pointless; you wouldn't tell someone with AIDS that their virus would go away if they saw a psychiatrist.
Changing the name from CFS back to Myalgic Encephalomyelitis might get us more respect, but it won't get us a cure -- there's no cure for ME, either. The only definitive proof that you had ME is an autopsy; so we wouldn't magically have proof of illness to offer to Disability; by the time you have an autopsy, it's too late to collect your benefits.
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