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Increasing signatures- just an idea
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Posted by: kd
January 27, 2008 |
Just a suggestion. It is possible that some who live with CFIDS may not be familiar with the terminology "ME" or Myalgic Encephaloyelitis. Maybe someone in the medical field, or at least someone with more research behind them than I have, would post an explanation. Otherwise, some may fear signing on to a name of which they have no knowledge or understanding.
Thanks,
kd |
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Reply 
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STOP THE INSANITY EVERYONE!!!
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Posted by: lkw777
February 16, 2008 |
2/16/2008
I'm hearing from quite a few folks that their posts are being rejected or removed from this site. This does not bode well for truth and honesty, now does it????
So I'll post, and we'll see what the site owners do with it.
~
Below is an excerpt from Steven DuPre's NAME appeal (2007). His & Lois Ventura's site, NAME, is very good. (see link at bottom).
This excerpt sums things up nicely, from an ME patient's point of view (G93.3, Neurogenic).
The BOTTOM LINE is that NONE of us who have ME are willing to sit back and allow our illness to continue to be highjacked by patients 'fatigued' for a myriad of reasons (Lyme, thyroid, mono, depression, Q-fever, or whatever).
The FACTs
The Terms,
The Defintions,
The Criterias
ALL must be adhered to. Doing anything less is just plain sloppy and indicates a level of ignorance that must be rectified immediately, before even more damage is done to the patients.
KNOW THIS:
-->There is NO WAY a 'sudden onset viral event' that changes lives and health as the patient knew them, within a matters of hours, AND THEN causes a 'cascade of events throughout the body' similar to the demylination of MS can POSSIBLY be the same thing as a 'syndrome based on 'fatigue'.
That is ABSURD!!!!
-->THAT is why ME is G93.3, Neurogenic (under Brain, CNS, Neurology) in the WHO (World Health Organization) classifications.
-->And why 'CFS' (Fukuda, et al) remains under R53.82 (under fatigue, and ill-defined).
UNDERSTAND THIS, PEOPLE!!!!
It's STEP NUMBER1-!
This ridiculous and preposterous and and ~relatively new within the last several years~ (since the creation of the 2003 ME/CFS Canadian Criteria) 'blending' and 'lumping' of 2 entirely DIFFERENT THINGS is just a continuation of the games being played by vested interests, who exist to keep the disability numbers LOW.
We ALL need to move beyond that crazy mixed notion and START DEMANDING CORRECT ILLNESS IDENTIFICATION, followed closely by rigid, strict, precise, well-planned and well-coordinated LARGE SCALE scientific research efforts on EACH illness seperately.
Any unwillingness to do so is just another sign of illness obfuscation done by those who benefit from keeping the truth hidden. And that would not be the patients, now would it??????
Think carefully.
Think clearly.
Think fully.
Use logic.
DEMAND BETTER.
And stop this foolishness and nonsense once and for all.
Because YOUR lives and health depend upon it.
And remember this, too: Studies done on mixed patient groups only produces mixed results (data). And that makes the data irrelevant. It's a waste of time, money and effort.
It helps no one. Which is exactly what the past 20 years have been all about.
Sincerely,
LK Woodruff
P.S. Because the USA--the supposed world leader--still uses the 17+ years old ICD9 Codes, all of us ME patients are currently coded under 393.9. Whenever the ICD10 Codes are utilized, we'll finally be able to be coded correctly under G93.3, Neurogenic. Of course, by then the rest of the world will have moved to the ICD 11's.....
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Here's the excerpt:
Myalgic Encephalomyelitis (ME) is a disease causing pathology to the brain and multiple organs and systems.
Classified as a Neurogenic illness--starts in the brain--by the World Health Organization since 1969, it is in the section 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 it remains largely unknown by the public or medical practitioners.
Dr. Melvin Ramsay's definition is the clearest for Myalgic Encephalomyelitis (ME):
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. 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 autoimmune effects of infection)
(4) A characteristically chronic relapsing course
Dr. Byron Hyde also offers a clear description:
Dr. Hyde, a Canadian specialist in Myalgic Encephalomyelitis (ME), considered by many to be the world's pre-eminent authority, offers this 2004 definition of Myalgic Encephalomyelitis:
"Myalgic Encephalomyelitis is a measurable, diffuse post-encephalitic illness. The illness is characterized by:
(1) its acute (sudden) 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 (ME) starts with an inflammation of the brain that occurs suddenly. This initial inflammation usually results from an infectious/autoimmune process, but it can also sometimes 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 infection(s) that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed."
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The Strategy of Ongoing Coverup
The USA CDC has stood intransigent in their desire to muddy the waters with their CFS construct in 1988 denying epidemic outbreaks of ME (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. William Reeves' argument that we cannot return to the name & criteria for ME because there have been numerous scientific articles using 'CFS' is a specious argument because 'CFS' was constructed on a false foundation. The USA and the world need to return to the original coding given the disease in 1969 by the World Health Organization and to the solid diagnostic criteria available from Dr. Melvin Ramsay, pioneer M. D. & researcher, as well as Dr. Byron Hyde,
world-renowned researcher and considered by many to be the pre-eminent authority on ME.
Recently, Dr. William Reeves has written his wrongheaded 'empirical definition', which is carefully reviewed by Dr. Leonard Jason because it dramtically inflates 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."
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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 Co-Cure archives post number 017795:
"The numbers game in CFS and why there is no meaningful research for treatment or cure" August 2007
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The Response to the Injustice & Quagmire
'ME/CFS'--a confusing 'blend' of ME and CFS by the 11 authors of the 2003 ME/CFS Canadian Criteria--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 and 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 ME, but it -->is an exhaustion originating in CNS dysfunction
-->which means it is not treatable with rest. LKW
The Congressional Action which mentions this commonality with MS is available at:
http://www.co-cure.org/Congressional_Action07.htm
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The model of a very similar disease, Multiple Sclerosis, shows a time of public denigration and later a time of public vindication.
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 small study after small study to build their case (e.g., Altered self in CFS, Psychoneuroendocrinology, Dr. James Jones of CDC.)
It's time for vindication of the clearly defined disease, Myalgic Encephalomyelitis (ME), to which the name 'CFS' has been given to a very watered down and weakened version of ME as a diversion tactic. It's time to turn back to the truth about this disease.
Today we have some excellent efforts. One example is of Norway's persistent work for the recognition of ME (the Norwegian ME Association):
http://www.investinme.org/InfoCentre%20Norway-2007-001.htm
Also, we have champions such as Dr. Hooper & others in UK. But few Drs or researchers in the USA who understand the history and the full situation, thanks in large part to the efforts of the USA CDC and the CAA to keep the focus tightly on 'CFS'.
In Nevada, the now being built Whittmore Peterson Institute may prove pivotal in backing international collaborative research efforts.
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 research better 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.
Steven Du Pre
Co-owner of the website: National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org
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