This just came in from Steven in CA.
Hello,
I am thinking this season about those with
Myalgic Encephalomyelitis/CFS whose lives were cut short
by a serious disease while governments & society continue
to turn a deaf ear regarding the suffering. After the poem
written as a Tribute to the Fallen, I made 4 short
talking points that relate to this subject.
Poem tribute to honor the Fallen:
Dark River
this relentless river of disease
presses on and spills over the levees---
the lives of young and old vanish
and yet remain disregarded
when voices are lifted up,
they are muffled under the dark watercourse--
proof obscured from public notice,
covering over any trace---
no time to examine such trivial matters,
while the stricken
have no strength
to protest as they disappear in the dim waters,
yet the small branches tremble
with the song of the winter wren
trailing paths of light---
always remembered, certain of the unveiling
*****************************************
1. The Truth
Largely forgotten & marginalized by society even though
M. E./CFS is a serious life-threatening disease.
Proof of serious disease was evidenced in autopsies/
complications of 3 young people in their 20s with the disease:
Casey Fero (age 23)
On July 4, 2005, at the age of 23, Casey Fero died in his sleep.
In September, a Madison forensic pathologist determined that Casey
had Myocarditis, that is, viral infection of the heart muscle. In
addition, he had fibrosis which is scar tissue from past infections. Some medical
researchers suggest that there is a link between cardiac problems and
chronic fatigue syndrome (CFS).
Casey was diagnosed with CFS at age 9 and again at age
15. It caused him to feel weak, unable to think, and exhausted.
He was plagued with headaches, and had major sleep disorder
among a list of daily symptoms. Casey persevered and did not
want people to know his condition.
Early on, he knew that medical help was unavailable and furthermore,
he was met with disbelief in the school and in the doctor’s office.
As a lasting tribute to Casey, the Fero family, the Wisconsin
Chronic Fatigue Syndrome Association, Inc., and Mothers
against Myalgic Encephalomyelitis, Inc. (MAME)created
the first universal access blood and tissue bank for ME-CFS
patients.
http://www.wicfs-me.org/casey_fero_blood_blank.htm
Sophia Mirza (age 32)
The Inquest into the Death of Sophia Mirza
13th June 2006, the inquest into the death of Sophia Mirza was
held in Brighton Coroners Court, England.
The cause of death was stated as
'acute renal failure as a result of CFS'
Two pathologists could not agree which name to use -
CFS, ME or ME/CFS.
In the end it was stated that CFS is a modern word for ME.
This is why CFS was used on the death certificate.
The pathologist also said -
'ME describes inflammation of the spinal chord and muscles.
My work supports the inflammation theory. There was
inflammation in the basal root ganglia.'
http://www.meactionuk.org.uk/
Alison Hunter (age 19)
died in 1996 from complications
arising from ME/CFS which included seizures, paralysis,
gastrointestinal paresis and overwhelming infection resembling
Behcets Disease.
Alison courageously fought ME/CFS for ten years
and was an unstinting advocate for young people.
Alison was the founding president of ME Young Adults (MEYA),
established in 1992 at Royal North Shore Hospital, Sydney.
(The Alison Hunter Memorial Foundation is a non-profit institution.
The Foundation works independently in a spirit of support and
cooperation with all researchers, institutions and ME/CFS societies
to advance scientific knowledge and medical care.)
http://www.ahmf.org/about.html
Some of those with severe M. E. are mentioned in "Personal Stories"
in the M. E. Society website: http://www.cfids-cab.org/MESA/personal.html
and also at this The Invest in M. E. website:
http://www.investinme.org/MEstorygallery1.htm
Some of those who have died prematurely are remembered
in the "In Memoriam" section of the Forum published by the
National CFIDS Association or this part of their website:
http://www.ncf-net.org/memorial.htm
MyalgicEncephalomyelitis is a disease causing pathology
to the brain and multiple organs and systems, and classified
as a disease of the nervous system by the World Health Organization.
(Recognized since 1969 within the section of neurologic diseases that
includes such diseases as encephalitis, meningitis, polioencephalitis,
multiple sclerosis, motor neurone, poliomyelitis, Parkinsons,
muscular dystrophy, cerebrovascular disease, demyelinating diseases,
Paraneoplastic encephalopathy, Toxic encephalopathy,
diseases often caused by viruses, bacteria or toxins).
M.E. is a serious disease of Central Nervous System, even though
largely unknown by the public or medical practitioners.
Dr. Melvin Ramsay's definition is the clearest for Myalgic
Encephalomyelitis and those diagnosed with CFS who have this disease:
http://www.name-us.org/DefintionsPages/DefRamsay.htm
The criteria in Dr. Ramsay's definition have been borne out in
later studies and are many times more solid than the CDC's criteria.
Dr. Ramsay criteria include:
Dr. Melvin Ramsay, 1986 definition:
A syndrome initiated by a virus infection, commonly in the
form of a respiratory or gastrointestinal illness with significant
headache, malaise and dizziness sometimes accompanied by
lymphadenopathy or rash. Insidious or more dramatic onsets
following neurological, cardiac or endocrine disability are also
recognized.
Characteristic features include:-
(1) A multisystem disease, primarily neurological with variable
involvement of liver, cardiac and skeletal muscle, lymphoid and
endocrine organs.
(2) Neurological disturbance - an unpredictable state of central
nervous system exhaustion following mental or physical exertion
which may be delayed and require several days for recovery; an
unique neuro-endocrine profile which differs from depression in
that the hypothalamic/pituitary/adrenal response to stress is deficient;
dysfunction of the autonomic and sensory nervous systems;
cognitive problems.
(3) Musculo-skeletal dysfunction in a proportion of patients
(related to sensory disturbance or to the late metabolic and
auto immune effects of infection)
(4) A characteristically chronic relapsing course
Dr. Byron Hyde also has a clear description:
Dr. Byron Hyde, a Canadian specialist in Myalgic Encephalomyelitis
offers this 2004 definition of Myalgic Encephalomyelitis: "Myalgic
Encephalomyelitis is a measurable, diffuse post-encephalitic illness.
The illness is characterized by (1) its acute onset, (2) the diffuse,
non-focal persisting nature of the encephalopathy, and (3) the
chronicity of the resulting symptoms. These symptoms consist
of the rapid exhaustion or loss of stamina of motor, sensory,
intellectual, and cognitive abilities. M.E. is of infectious/autoimmune
origin and less commonly, a toxic/autoimmune origin.
M.E. occurs in epidemics and sporadic cases."
Myalgic Encephalomyelitis starts with an inflammation of the
brain that occurs rather suddenly. This initial inflammation
usually results from an infectious/autoimmune process, but
it can also be caused by a toxic/autoimmune process. This
sudden, short-term inflammation is followed by a disorder
of the brain that continues over time. This chronic disorder of the
brain is not localized to a small part of the brain, but is spread out
over large regions of the brain, and it leads to chronic symptoms
that can involve essentially all the normal functions of the brain.
The primary injury in Myalgic Encephalomyelitis is the diffuse CNS
encephalopathy, the illness may cause or be associated with measurable
dysfunction in end organs and various body systems. The most
commonly injured end organs and systems are (1) the thyroid gland,
(2) the cardiovascular system and (3) the immune system. The CNS
dysfunctions are caused by widespread, measurable, diffuse
micro-vasculitis affecting normal cell operation and maintenance.
"The evidence would suggest that Myalgic Encephalomyelitis is
if caused primarily by a diverse group of viral infections that have
neurotropic characteristics and that appear to exert their influence
primarily on the CNS arterial bed."
***************************************************
2. The Strategy of Ongoing Coverup
CDC has stood intransigent in their desire to muddy the waters
with their CFS construct in 1988 denying epidemic outbreaks
of M. E. (see Osler's Web, by Hillary Johnson). The revised CDC
mantra includes CFS as "illness behavior" rather than a legitimate
disease. This prepares the ground for the ICD 10 coding for CFS
to be placed in the R53 category psychosomatic conditions.
Therefore, the strategy is 1. To ignore M. E.; 2. Make CFS
a problem of false perception of illness; 3. ICD code that falls
in line with the revised CDC mantra. Thus, further bury epidemic
outbreaks of M. E. in the US under faulty epidemiology work in 1980s
by a group of scientists that did not listen to the voices of Dr. Hyde
and others pointing to the clear markers of Myalgic Encephalomyelitis.
---Dr. Reeves' argument that we cannot return to the name &
criteria for M. E. because there have been numerous
scientific articles using CFS is a specious argument because CFS
was constructed on a false foundation and needs to return to the
original coding given the disease in 1969 by the World Health Org.
and solid diagnostic criteria available from Dr. Melvin Ramsay,
pioneer M. D. & researcher, as well as Dr. Byron Hyde,
recent researcher & M.D.
---Recently, Dr. William Reeves has written his wrongheaded
2005 empirical definition, which is carefully reviewed
by Dr. Leonard Jason because it inflated
prevalence rates: http://iacfs.net/p/1,544.html
One paragraph from the Dr. Jason study:
"Reeves et al. (2005) claims that the empirical definition identifies
people with CFS in a more precise manner than can occur in the more
traditional way. It is primarily the use of this new empirical case
definition that has lead to the increase in CFS prevalence rates in the
United States. In their use of the empirical case definition, several
changes occurred to what had been previously recommended by
an international expert committee (Reeves et al., 2003) of
recommendations
for the case definition of Fukuda et al. (1994). First, rather than
excluding those with depressive disorder with melancholic features,
only those with a current condition were excluded as opposed to what
had been recommended. Of interest, of those 16 within the Reyes et al.
(2003) study who had been classified with CFS using the more
traditional methods, 6 had a past history of major depressive
disorder with melancholic features (Reeves et al., 2005); and it is
unclear how many of those 43 who were diagnosed using the empiric
case definition had past depressive disorder with melancholic features.
These individuals should have been excluded, and by including them,
the broadening of the case definition has the potential to bring into
the CFS category those with a primary psychiatric condition. More
importantly, there was little agreement between the empirical method
of classifying individuals with the more traditional method of comparing
whether an individual met the case definition on their critical
symptoms.
Rather than assuming that this might be a problem with the CFS
empirical case definition, they concluded that the more traditional
way of diagnosing patients was flawed. As an example of this
problem, one individual who was classified as being in remission for
CFS using the traditional method was diagnosed with current CFS
using the CDC’s empirical approach."
***********************************************
3. The Underbelly of Purpose for the Cover-up
Obviously, the desire from the economic point of view
is to keep people off of the disability programs & to direct patients
toward the psychotropic pharmacological solutions of Big Pharma.
See:
"The numbers game in CFS and why there is no meaningful research
for treatment or cure" August 2007
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0708C&L=CO-CURE&P=R584&I=-1
**************************************************
4. The Response to the Injustice & Quagmire
M. E./CFS has not been able to get public square advocacy
that Multiple Sclerosis was able to garner where they were able to
change the name from Fakers Disease or Hysterics Paralysis
back to Multiple Sclerosis, the original name,
documented by the famous French neurologist
Jean-Martin Charcot in the 1860's. And then later in 1950,
through pressure by the MS Society on Congress,
they were able to get MS classified in the
area of Neurological Disorders in the NIH.
In the book, Courage: The Story of the Mighty Effort to End
that Devastating Effects of Multiple Sclerosis, which chronicles
the story of Sylvia Lawry, whose brother was an MS victim
and who built in the National Multiple Sclerosis Society
& who made it her lifetime mission to end
the suffering of people with MS. In the 1940s, when Sylvia
was looking for an answer, many patients were told they
were overworked or run down and simply needed to
make changes in their way of life.
Others were advised that the illness was psychosomatic
and that they should consult a psychiatrist.
The four main types of MS are defined based on the way the disease
progresses in an individual patient:
RRMS (Relapsing-Remitting MS), PPMS (Primary-Progressive MS),
PRMS (Progressive-Relapsing MS), SPMS (Secondary-Progressive MS)
MS is a highly individual disease, and it can be difficult to determine
which category a patient falls into. In addition to differences in
patterns of disease progression, different patients may experience
entirely different types of symptoms.
Exhaustion is a common symptom of MS, as it is for M. E.,
but it is an exhaustion originating in CNS dysfunction.
The Congressional Action which mentions this commonality with MS
is available at: http://www.co-cure.org/Congressional_Action07.htm
*********************************************************
The fallen continue to drown and disappear in the dark river.
The unjust situations at CDC & NIH continue to dominate the landscape
and it seems continue to grow towards a psychosocial model for the
disease called CFS, piling up study after study to build their case
(e.g.Altered self in CFS, Psychoneuroendocrinology, Dr. James Jones
of CDC.)
The model of a very similar disease, Multiple Sclerosis, shows a time
of public denigration and later a time of public vindication.
It's time for vindication of the clearly defined disease, Myalgic
Encephalomyelitis, which was given the name CFS as a diversion tactic. It's time to turn back to the truth about this disease.
We have the example of Norway's persistent work for the
recognition of M. E. (the Norwegian ME Association),
http://www.investinme.org/InfoCentre%20Norway-2007-001.htm
Also, we have champions such as Dr. Hooper & others in UK
& Dr. Jason and others in US. Other good work is being taken up
as mentioned above by the Wisconsin group in addition to PANDORA,
the Florida group helped by Marly Silverman http://pandoranet.info/
and the work in Nevada for the Whittmore Peterson Center. The
Vermont support group has also been active:
http://monkeyswithwings.com/vtcfids.html
Dr. Kenneth Friedman has made useful suggestions
on better research methods by NIH incorporating
WHO or European Union methods:
The World Health Organization’s TDRP
(http://www.who.int/tdr/about/strategy/default.htm , contains
procedures more appropriate for waging a war on illness than the
procedures employed by the NIH.
The European Union’s method of funding research
their Framework Program (FP), utilizes procedures and
policies which would appear to stimulate CFS research more
than the methods used in the United States. The FP supports
Centers of Excellence whose purpose is to provide instruments
and resources, and coordination of research programs. The FP
also encourages “mobile” research scientists.
Whether greater visibility of CFS through
the CFIDS Association's alliance with the CDC is useful or not
becomes suspect because of recent inflated prevalence rates
as mentioned above which has been shown to favor a
psychosocial model by Dr. Reeves' 2005 empirical definition
which fails to exclude depressive disorder according the study
by Dr. Jason.
Another avenue of change is prayer for breaking down the
cover-up at CDC, the psychosocial model of the disease
and the resistance to the truth about Myalgic
Encephalomyelitis.
For example, the World M. E. & FM Prayer & Meditation
Day occurs the first Monday of every month between 12 noon-12:30 p.m.
in whichever time zone you are in. It's a special time for people to
unite with the intention to focus on the well-being of those with M. E. and/
or FM. It is organized by Suzanne Olivante of Eastbourne, England--
* e-mail *time2link@talktalk.net
* or visit the blog at http://time2link.livejournal.com
where details about the event/a basic guide to linking-in can be found
in the PROFILE and also links to useful websites.
* There is also a new community site called *ourtime2link*, which you
can access directly from the blog or go to
http://community.livejournal.com/ourtime2link/
The fallen are drowning in the dark river and considered to be psychologically unstable and to blame for their own disease under the shadow of many studies coming from Dr. Reeves & the CDC
& recent American studies. The fall of normally healthy individuals after a serious infection-type onset is ignored or relegated to altered self perception, turning a serious disease into a somatic illness.
Steven Du Pre
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org
No comments:
Post a Comment