Hi Dominie, This is Bob in Atlanta. I was
diagnosed with CFS in 1987 and have been suffering with it since the end of
1984. I had a severe onset in late 1985 but began to feel sluggish
immediately after multiple vaccines in the USAF in 1977, including the Swine Flu
Vaccine. I was then again deployed to Turkey during my Air National
Guard Service and received multiple vaccinations for that deployment as well. I
became very ill from that group of vaccines. My body began to
change after that group of vaccines. I was forced to resign two years
early from the GA Air National Guard because of my illness. I was
unable to arrise early to go to my weekend training or to complete the 1 mile
run that was required on an annual basis for certification. To most people
this would not be a big deal but I had run over 18,000 miles at that point and
was a former 4:14 miler in high school. My story is one that every member of our armed forces needs to
hear. I was given a cocktail of mulitple vaccines on two seperate
ocassions and had reactions both times. This onslaught of vaccines damaged
my immune system and I believe led to my CFS. I was also diagnosed with
FMS in 1999 by Dr. John Goldman in Atlanta I have two graduate programs completed and a Masters in Public
Administration. But I am unable to work more than 2-3 hours a
day. I have suffered for many years and I continue to fight the
VA for disability. The VA has denied my claim since 1999 sighting that I
cannot prove service connection. I have letters from 5 major doctors, 4 are military doctors that state
that the vaccines in recieved in service are temporal and causal in relationship
to my Chronic Fatigue Syndrome. But the VA was not satisfied with that,
they went in house to their own Chief of Staff to get him to say that he would
be resorting to pure speculation that the vaccines could just as likely as
unlikely caused my illnesses. This is the exact terminology they need to
deny a claim. So if you would allow I would like to write an article to those who
served in our military and to others who have recieved mulitple vaccines to tell
them of the dangers. Recently the CDC stated that Genetics play a major role in
CFS. Well, if the miltary wants to keep another 100,000 troops from
becoming ill then maybe they will study this and find out what the Genetic
marker is and not give mulitple vaccines to the group with the Genetic defect.
I will write as a short narrative of my personal
history with CFS and Fibro and how the vaccines affected my health and how the
military continues to deny veterans the benefits they deserve as a result of
their reciept of vaccines. I will use supporting statements from Dr. Limone Collins and
others to show the relationship to CFS and vaccines. Dr. Collins is the
Medical Director at Walter Reed Medical Center overseeing the
Vaccine Healthcare Injuries in Veterans. Hi Dominie – it’s Mary Anne in 2) This combination of natural substances: 5-HTP
- 3) Meditation. I too come from a Christian
background and was taught to pray, but for some reason we seem to miss “the
other half of the equation.” Someone once said that if praying is talking
to God, then meditation is listening for the answer! There is even
biblical support for a meditation practice – I forget exactly where it is, but
somewhere in the Old Testament is the quote “Be still and know that I am
God.” It’s waaaaaaaay too sad that this wonderful tradition is largely
“lost” on Christian peoples – almost no denominations are teaching it. It
seems to have fallen almost wholesale into the realm of other [and to some
people “questionable”] spiritual traditions, and thus may come across as a
“tainted” or unchristian practice, when in fact it is a highly Christian
discipline! [How great it would be to find a Christian meditation teacher – but
I haven’t so far, so I’ve learned the techniques without absorbing any of the
philosophy, and it’s worked for me]. Quieting you mind and breathing
deeply for 20 minutes each day is both a tremendous relaxer and energizer, and
definitely takes the focus off your
pain. 4) A program of intense body
detoxification. Not a detox program for alcoholics and drug
addicts, but detox from our tainted world: pharmaceuticals, food chemicals,
preservatives, additives, artificial sweeteners, colors, flavors, and the
chemical poisons we pump into our water, air and soil. I just got home
from a week out in the desert area of So.
CALL FOR CONGRESSIONAL
ACTION From Steve Dupre isaiah40@sbcglobal.net : A disabling neuroimmune disease that affects more Americans than
AIDS, breast cancer and lung cancer combined, more people than have multiple
sclerosis or cystic fibrosis, a disease where patients are more functionally
impaired than those suffering from diabetes, heart failure and kidney disease, a
disease which costs the U.S. more than $9.1 billion annually in lost
productivity has been sorely neglected by government health
agencies. More than 900,000 Americans of all age, racial, ethnic, and socioeconomic
groups suffer for years, decades and often their entire lives from this
disease. Its impacts on the economy have been measured and are
significant. Yet after nearly four decades as an internationally recognized
and categorized disabling neurological disorder, Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS) here in the U.S. remains
one of the most underfunded, maligned, miscategorized life-altering illnesses of
our time. Why? It carries the burden of a flawed case definition and a trivializing,
medically inaccurate name (Chronic Fatigue Syndrome) in this country. At the NIH, it has had funds misappropriated, ad hoc grant panels with few or
no expert members, incorrectly committed to the Office of Women’s Health even
though 30% of patients are male, and had recommendations by expert medical
committees to public health agencies ignored. It has been miscategorized, misnamed and thus wrongly associated with mental
illness in both the CDC & NIH. Because of extreme scientific bias against the disease as an organic entity
(see Expert Testimony below) the agency has neither instituted a standing
committee nor appropriated specific and generous sums each year to generate
research. There is a standing grant review for every major disease at
NIH and most minor diseases. Myalgic Encephalomyelitis/CFS
disease is a major, major disease. Nevertheless, of all diseases,
CFS is at the bottom rung of funding at NIH, in spite of the enormous number of
people ill, continued uncertainty as to what is driving this outbreak and how to
protect the public from acquiring the disease, not to mention the
disability burdens on insurers, the SSA, and again, lost productivity in a
struggling American economy. Also, in spite of Congress' doubling
of the NIH research budget in the last four or five years. All
Americans are all at risk of acquiring the disease because the federal health
agencies have been derelict for so long; and as a result there is no cure or
even palliative treatment anywhere on the horizon. What can be done for constituents through Congressional action? Here are
the actions we ask you to take: By Congressional action, require the NIH to form a standing committee to
approve research grants for the neurological disease, Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome, and ensuring that the research is
biomedical in nature instead of psychiatric while also investigating past
failure to properly allocate research efforts for this serious neurological
disease. Instruct the NIH to place ME/CFS under Neurological Disorders & Stroke,
instead of the Office of Women’s Health (30% of all patients are male). Require the CDC and NIH to formally adopt the 2003 Myalgic
Enchephalomyelitis/Chronic Fatigue Syndrome Clincal Working Case Definition
Diagnostic and Treatment Protocols; A Consensus Document to replace the
present inadequate 1994 Fukuda criteria, adapting this document for
research usage also. Adopting this consensus document would benefit in terms of
quicker, more accuarate diagnosis, treatment and possible return to
productivity. At the same time, Implement the internationally accepted name Myalgic Encephalomyelitis/CFS to
accurately describe what is currently known about the disease. Require Secretary Leavitt to implement the 11 recommendations made by his
Chronic Fatigue Syndrome Advisory Committee in November 2004, recommendations
which serve to implement the neurological classification and funding of
research. (NOTE: Secretary Leavitt has been urged in writing by several
members of Congress to implement these recommendations, yet nothing has been
done.) Instruct the CDC to update the information it disseminates to reflect the
World Health Organization classification (Myalgic Encephalomyelitis/CFS in the
ICD-10 under the neurological classification G93.3) and the above mentioned
Congressional orders. Why we ask Our Public Servants to Take Action at this
time Both of CDC and NIH have been unresponsive to numerous requests for
fundamental change by ME/CFS patients and their caregivers, as well as ME/CFS
clinicians and researchers, even though most of the requests are not for more
funding! Yet our requests remain unanswered after more than two decades, and we
remain disabled, misunderstood, and without any available treatment that could
possibly return many of us to economic productivity, instead of being a burden
on society. Americans will benefit by simply having the disease properly
categorized and correct up-to-date information provided for health care
providers and citizens not currently provided by NIH or CDC Attached is more in-depth information as well as references supporting the
need for immediate action on the above requests. Thank you for your
consideration and support. Sincerely, Steven Du Pre Expert Testimony Example #1: According to Anthony Komaroff, Professor of Medicine at
Harvard and a renowned world expert on ME/CFS, there are now more than 2,000
papers which demonstrate that ME/CFS is an organic, and not a
psychiatric, disorder. Example #2: In 1999, Dr. Leonard Jason from DePaul University,
Chicago, was outspoken, writing that it is regrettable that the disorder is
portrayed in such a narrow way, and that flaws in the case definitions of 'CFS'
have led to "inaccurate and biased characterization of ME/CFS which incorrectly
favors a psychiatric view of the illness". He correctly pointed out
"the erroneous inclusion of people with primary psychiatric conditions in ME/CFS
samples will have detrimental consequences for the interpretation of treatment
efficacy findings". As Professor Jason stated in his letter of May 12th, 2005, to the Editor
of Psychology Today, ME/CFS is a "devastating chronic disorder," and he
questioned why it is assumed that it is only sufferers themselves who believe it
to be an organic disorder when many scientists, including himself, support such
a view. He further stated that there has been a mass ignoring of "a
large body of medical research demonstrating biological abnormalities in
individuals with ME/CFS. For years, investigators have noted numerous biomedical
abnormalities among ME/CFS patients, including over-activated immune
systems, biochemical dysregulation in the 2-5A synthetase / RNASE L pathway,
muscle abnormalities, cardiac dysfunction, abnormal EEG profiles, abnormalities
in cerebral white matter, decreases in blood flow throughout the brain, and
autonomic nervous system dysfunction." Instead, too many doctors still demonstrate a repeated failure to
distinguish between "chronic fatigue" and ME/CFS (even though the differences
have been repeatedly brought to their attention and even though as long ago as
1990, the American Medical Association issued a specific notice emphasizing that
'chronic fatigue' is a symptom that presents with many illnesses, and not at all
the same as chronic fatigue syndrome (CFS). This has resulted in suppression
of biomedical evidence of ME/CFS. Focusing on the single symptom of
'fatigue' or 'chronic fatigue' in ME/CFS and ignoring the other significant
symptoms and signs, especially cardiovascular, neurological and
immunological, keeps the focus off the far more debilitating symptoms
that these patients suffer from (i.e., Orthostatic Intolerance
(OI), cognitive deficiencies, and cardiac insufficiency, etc.) Example #3: ME/CFS expert, Dr. Daniel Peterson from Nevada has gone
on record saying that ten years ago (i.e., in 1989) he believed that
(ME)CFS would be resolved by science; he has since changed his mind and believes
that it can only be resolved by politics.
LYME TESTING Dear Dominie, I was a long term diagnosed patient with CFS and Fibro.
It turned out that
VEGAN & NO SUGAR DIET
HI Dominie, MERCURY
with proper testing, it was and always will be Lyme
Disease. It seems that
chronic fatigue and fibro pain and
autonomic system dysfunction (hypothalmic
pituitary axis problems) are
the hallmark of chronic Lyme. My question to
you. Have you
ever had a Lyme test sent to the Igenex Lab in California?
I am wondering if you have heard anything about a Vegan/ no
sugar diet for
some symptoms of Fibro. My doctor recommended getting off of
all animal
products and restricting sugar and it has made a huge difference
in my mild
case. No aches and pains and I sleep like a baby. I
feel better mentally
also--wouldn't go back for the world. Just a
little "food" for thought. Thanks for all of your work toward helping
other people.
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