Friday, February 13, 2015

Pseudo-diagnosis will bury ME even further

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13 February 2015
Editorship :

By Jerrold Spinhirne
The US Department of Health and Human
Services (HHS) has paid the non-profit
Institute of Medicine  (IOM)                      
( $1,000,000
for the naming rights to the established
neurological disease Myalgic                               
Encephalomyelitis (ICD G93.3 ME).

This is not science, but the
exercise of raw political and
economic power.

The ridiculous name the IOM committee
came up with after "much thought" has no
legitimacy whatsoever and should be
scrapped before more precious time and
resources are wasted.

The disease was named myalgic
encephalomyelitis originally in a 1956 Lancet
editorial later attributed to Dr. E. Donald

Drs. A. Melvin Ramsay and John Richardson
also used the name ME at this time.

The name ME was based on careful clinical
examination of thousands of patients from
over a dozen outbreaks of the epidemic form
of the disease beginning with an outbreak in
Los Angeles in 1934.

The 1956 Lancet editorial, "A New Clinical
Entity" said this about the name of the
"From the purely practical standpoint it
would be useful to have a name for this

As the most helpful single feature in the
recognition of this syndrome in the past has
been the predominately normal cerebrospinal
fluid, the names which have already been
suggested, "Iceland disease" and "Akureyri
disease," are not really appropriate.

The objections to any but a purely
descriptive name for a disorder without a
known cause or established pathology are

For this reason, the term "benign myalgic
encephalomyelitis" may be acceptable.

It in no way prejudices the argument for or
against a single or related group of causal
agents; and it does describe some of the
striking features of a syndrome
characterized by:

       (1) symptoms and signs of damage
       to the brain and spinal chord, in a
       greater or lesser degree;

       (2) protracted muscle pain with
       paresis [partial paralysis, muscle
       weakness] and cramp;

       (3) emotional disturbances in

       (4) normal C.S.F.;

       (5) involvement, in some variants,
       of the reticuloendothelial system
       [part of the immune response

       (6) a protracted course with
       relapses in severe cases; and

       (7) a relatively benign outcome.
       [Death did not occur immediately
       after onset.]

It remains to identify this syndrome more
precisely; but we believe its characteristics
are now sufficiently clear to differentiate it
from poliomyelitis, epidemic myalgia,
glandular fever, the forms of epidemic
encephalitis already described, and, need it
be said, hysteria."

This is the history of
ME that HHS is
seeking to erase by
hiring the IOM.

Making ME disappear serves
several purposes for HHS:

It covers up the series of errors and
misconduct at the NIH and CDC in dealing
with the disease beginning 1985.

HHS wants to preserved the perceived
authority and credibility of these agencies,
even if it means contributing to increased
levels of disability and premature death in
the population.

2.)  It protects the economic health of the
private insurance industry which HHS
evidently values more highly than the public

3.)  It saves HHS the cost of appropriately
funding research on a major neurological

Instead, HHS gets away with spending a
pittance every year on a trivialized
fatigue-based illness that has been greeted
with skepticism by doctors and the public.

Seeing that the deception created
around CFS was breaking down after 30
years, HHS wants to begin the cycle
afresh by creating a new, updated
version of CFS, using the IOM, with yet
another inappropriate, trivializing name.

This new pseudo-diagnosis
will then be used to bury ME
even further.

This must not be allowed to
happen all over again.

PEM, NOT Chronic Fatigue, is why patients
 are bedridden, homebound, unemployed,
        and unable to walk a block.

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