Thursday, April 27, 2006

Request for Congressional Action - please write letters!

PERMISSION TO RE-POST -- REPOSTING IS ENCOURAGED!

 

Hello,

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients must go to
Congress with advocacy needs that have not been met by the CDC or NIH.  The
link below will lead you to a proposed Request for Congressional Action for
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  We are presenting it
for anyone who wants to use it. This action is
for the May 12 Awareness Day, but also to carry out through the year 2006.

We are requesting you to send it to your Congressional Representative and
Senators.  We think that Congressional intervention is necessary because of
the sad state of affairs in the areas of research, medical treatment, and
public awareness of the severity of this disease.

Twenty years after the Incline Village outbreak, the CDC admits that 85
percent of patients have not been diagnosed - and the majority of those who
have been diagnosed receive little or no medical treatment.  There is still
no cure, nor even the hope of one.  Too much time has been wasted while the
patient population has grown to nearly one million.  It has been 10 years
since Hilary Johnson's "Osler's Web" was published, exposing the truth
which CDC/NIH have tried to hide: M.E./CFS was portrayed as a purely
psychological problem in order to save money for the government and
insurance companies.  CDC/NIH have even misrepresented the results of
recent research, proving this leopard hasn't changed its spots.  They have
touted their own research as the "first evidence" that CFS is real, despite
2000+ prior research studies showing primarily biological causes for the
symptoms, and disproving the claims that it is purely a reaction to stress.

We have to take matters into our own hands, or nothing will happen.  Too
many patients have suffered too long.

Please join us in asking for Congressional Action to intervene and begin
the process of resolving this crisis.  Please write a brief letter to your
Congressperson and Senators, explaining how M.E./CFS has affected you
personally, and attach a print-out of this Request for Congressional Action
so that Congress knows exactly what we, as patients, need and want.


Below are the links for the "Congressional Action" & "How to use the
Congressional Action."
(in PDF, Word, & WordPerfect to print out for your Congress people)
This post also includes these two documents below for your review.



Thanks for your participation,
Steven Du Pre, Vice-President California Capital CFIDS Association
Lois Ventura, Pennsylvania M.E. Advocate
Karen M. Campbell, Founder of CFSfacts.org
Victoria Bell, California M.E. Advocate
Patricia Caprio, Founder of Million Letter Campaign



See
http://www.co-cure.org/Congressional_Action.pdf
http://www.co-cure.org/Cover_Letter.pdf

http://www.co-cure.org/Congressional_Action.doc
http://www.co-cure.org/Cover_Letter.doc

http://www.co-cure.org/Congressional_Action.wpd
http://www.co-cure.org/Cover_letter.wpd



Call for Congressional Action for Myalgic Encephalomyelitis/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is 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.  This
disease which costs the U.S. more than $9.1 billion annually in lost
productivity has been sorely neglected by government health agencies.[1]

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.[2]  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?

·         "Chronic Fatigue Syndrome" carries the burden of a flawed case
definition[3]  as well as an inappropriate, trivializing name, both
produced by the CDC. Only in the US among English-speaking countries is the
name CFS used to the exclusion of the more accurate scientific name,
Myalgic Encephalomyelitis (the US oversight is due to mistaken epidemiology
work by the CDC in the 1980s, not recognizing an already existing disease).

·         The NIH has misappropriated funds, sent requests for research
funding to ad hoc panels with few or no expert members, relegated the
disease to the Office of Women's Health although 30% of patients are male,
and ignored recommendations by medical committees and the Chronic Fatigue
Syndrome Advisory Committee (CFSAC) Recommendations available here:
http://www.cfids-me.org/cfscc/recommend.html

·         Instead of making use of a half-century of research and clinical
information available about Myalgic Encephalomyelitis (first identified in
1934 and in the World Health Organization's International Classification of
Diseases [ICD] since 1969), the CDC and NIH chose to focus on the
non-medical criteria "fatigue", leading to the mistaken impression both
within and without the agencies that "CFS" was a psychosomatic or minor
illness when ample evidence to the contrary was available.

·         The resulting scientific bias against the organic nature of the
serious disease (see Expert Testimony below) has been used as an excuse by
both agencies to withhold current information from the public and
Congress.  At the same time, NIH has refused to institute a standing
committee or set appropriate levels of funding.  Nearly a million Americans
have this disease, but in the twenty years since CDC renamed it, neither
the general medical community nor the public has learned anything about
etiology, transmission, or appropriate treatment protocols even though
researchers have learned a great deal (with objective findings of clear
physical abnormalities), but it's not filtering down to the trenches
because the NIH and CDC continue to fund studies that try to promulgate the
false premise of psychological problems (Dr. Anthony Komaroff of Harvard
Univ. & Dr. Leonard Jason of DePaul Univ., among many others, have refuted
that false premise).  Both the NIH and CDC have contributed to the
continuation of misinformation about outbreaks of the disease by
promulgating ignorance.

Example:  Recent highly-publicized gene expression research by the CDC
conspicuously dodged the major biological underpinnings discovered by many
studies here and abroad about this disabling disease.  Instead
they  emphasized how "stress" affects patients, yet again implying a
primarily psychological cause.CDC Director Dr. Gerberding's misleading
statement: "This is thefirst credible evidence for a biological basis for
CFS" ignores 2000+ prior studies since the mid-1980s demonstrating
objective, organic evidence of viral damage, neurological and immunological
abnormalities, circulatory abnormalities[4] and other clear physical causes
for the symptoms.

·         While Congress has increased overall funding to the NIH, NIH
allocations for studying "CFS" have declined precipitously.   According to
CDC, allocations to study "CFS" total less than $4 per patient.  Even more
disheartening, investigations have found that some of that money has been
spent on researching other diseases with a symptom in common with CFS,
rather than specifically on "CFS."

·          As long as NIH and CDC continue to bury what is known about this
disease, every man, woman and child in America is at risk of contracting
the illness.  Those who do fall ill soon discover the U.S. agencies do not
even have the most basic clinical treatment standards available for their
doctors.  If CDC does not inform the public when a severe outbreak of
disease is in process, what purpose does it serve?  If NIH refuses to
allocate a penny for research on a mysterious disease that has left over
half a million Americans jobless, what purpose does it serve?

WE NEED YOUR HELP.  Here are the actions we are asking Congress to take:

1.       By Congressional action, require the NIH to form a standing
committee to approve research grants for the neurological disease, Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome, ensure that the research is
biomedical in nature instead of psychiatric, and also investigate past
failure to properly allocate research efforts for this serious neurological
disease (proof of failure: http://www.co-cure.org/PatFero.htm).

2.       Instruct the NIH to place M.E./CFS under Neurological Disorders &
Stroke [5], instead of the Office of Women's Health (30% of all patients
are male).  Historical precedent: Congressional action in 1950 to place
Multiple Sclerosis (formerly called "Hysterics Disease") under the category
of Neurological Disorders at the NIH through the efforts of the MS
Society.  Note that the NIH & CDC ignored evidence of the neurological
abnormalities in M.E./CFS when they did their cursory investigation of
outbreaks of the disease in Nevada & California in the late 1980s and early
1990s.[6]  This provides clear reasons for actions on the part of Congress
to correct serious flaws in the handling of Myalgic Encephalomyelitis/CFS
outbreaks in the US.

3.       Require the CDC and NIH to formally adopt the 2003 Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition
Diagnostic and Treatment Protocols; A Consensus Document (available at:
http://www.mefmaction.net/documents/me_overview.pdf ) to replace the
present inadequate and inaccurate 1994 Fukuda criteria (proven by Dr.
Leonard Jason in the study cited in reference #3).  At the same time,
implement the internationally accepted name Myalgic Encephalomyelitis/CFS
to accurately describe what is currently known about the disease.

4.       Require Secretary Leavitt to incorporate the 11 recommendations
made by his Chronic Fatigue Syndrome Advisory Committee (CFSAC) in November
2004, recommendations which serve to implement the neurological
classification and funding of research. CFSAC is the DHHS-appointed
committee comprised of many of the top ME/CFS veteran researchers and
clinicians in the U.S. (NOTE:  Secretary Leavitt has been urged in writing
by several members of Congress to implement these recommendations, yet
nothing has been done.)

5.       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

For two decades, CDC and NIH have refused to respond to numerous requests
by M.E./CFS patients, caregivers, researchers and clinicians, even though
most of the requests would involve little or no funding. Ignored by the
very agencies that are charged with addressing public health issues such as
this, we remain disabled, misunderstood, bereft of sensible treatment and,
unable to return to economic productivity, a burden on our families and
society as a whole.  All Americans would benefit by the simple
re-categorization of this disease to the WHO ICD-10 category where it
belongs, under neurology, together with the international terms Myalgic
Encephalomyelitis and Post-Viral Disease Syndrome.  If the NIH and CDC
refuse to fund new research into this disease, at least we could benefit
from what is already known outside the United States.

More in-depth information is available at your request at
<info@CFSfacts.org> as well as references supporting the need for immediate
action on the above recommendations.  Thank you for your consideration and
support.


Expert Testimony

Example #1: According to Anthony Komaroff, Professor of Medicine at Harvard
and a renowned world expert on M.E./CFS, there are now more than 2,000
papers which demonstrate unequivocally that M.E./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 the symptom of "chronic fatigue" resulting from
overwork or as a symptom of other medical conditions and the
entirely-different disease of 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/memory dysfunction, and cardiac insufficiency, etc.)

Example #3: M.E./CFS expert, Dr. Daniel Peterson from Incline Village,
Nevada, has gone on record saying that in 1989 he believed that M.E./CFS
would be resolved by science; he has since changed his mind and believes
that it can only be resolved by politics.

Example #4: Katrina Berne, Ph.D in her book on the disease reported"...The
apparently disinterested CDC essentially turned its back on the devastation
in Incline Village and elsewhere.

Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic
Fatigue Syndrome" was selected by a small group of politically motivated
and/or poorly informed scientists and doctors who were vastly more
concerned about costs to insurance companies and the Social Security
Administration than about public health.  Their deliberate intention  based
on the correspondence they exchanged over a period of months  was
to  obfuscate the nature of the disease by placing it in the realm of
the  psychiatric rather than the organic.  The harm they have caused is
surely one of the great tragedies of medicine."

Example #5:   "I have treated more than 2,000 AIDS and CFS patients in my
career. And the CFS patients are MORE sick and MORE disabled every single
day than my AIDS patients are, except for the last two months of life!" Dr.
Marc Loveless who testified under oath before Congress in 1995.

_______________________________________

References:

1. Reynolds KJ, VernonSD, Bouchery E, Reeves WC. The economic impact of
chronic fatigue syndrome. Cost Effectiveness and Resource Allocation 2:4, 2004.

2. Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S: A Community Based Study of Chronic
Fatigue Syndrome Arch Int Med 1999; 159(18):2129-37.

3. Dr. Leonard Jason, DePaul University expert researcher in this area, has
fully demonstrated in a 2004 study (J of Chronic Fatigue Syndrome, Vol. 12,
Issue 1) that this 2003 Working Case Definition can identify a clear,
definitive cohort of patients with the disease. Also, in 2003, Dr. Jason
demonstrated the ineffectiveness of the CDC criteria: "Variability in
Diagnostic Criteria for Chronic Fatigue Syndrome may result in substantial
differences in patterns of symptoms and disability," Evaluation & the
Health Professions, March 2003:26:1:3-22- finding -"Although
post-exertional malaise and impairment of memory and concentration are
essential for the ME criteria, they are not required for the Fukuda et al
(CDC 1994) criteria."

4. "Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic
Fatigue Syndrome." The American Journal of the Medical Sciences. 2003;
326(2):55-60.
Synopsis: While the cause of chronic fatigue syndrome (CFS) remains
unknown, researchers have noted circulatory irregularities in many
patients. These include autonomic nervous system dysfunction, often
manifested as orthostatic intolerance; neuroendocrine
abnormalities  reduced plasma volume; and low red blood cell mass. In
combination, some researchers believe, these factors could create
deficiencies in blood flow to organs and muscles  with resultant symptoms,
such as post-exertional fatigue, that are hallmarks of CFS


5.  Scientific studies on the neurological abnormalities in Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome available at this website:
http://www.co-cure.org/neurological.htm

6.  Osler's Web, by Hillary Johnson and testimony by Dr. Paul
Cheney  before the FDA Scientific Advisory Committee in 1993 regarding the
alarming rate of neurologic & neurocognitive elements of M.E./CFS:
http://www.ncf-net.org/conference/CheneyTestimony.htm


________________________________________________________________

How to use this Congressional Action

The link below contains a printable version of the Congressional Action
we're taking for this year 2006 as well as Awareness Day, May 12, 2006.

http://www.co-cure.org/Congressional_Action.pdf

http://www.co-cure.org/Congressional_Action.doc

http://www.co-cure.org/Congressional_Action.wpd

Add a brief cover letter (one or two short paragraphs) about how this
disease has affected you, and send it with a copy of the Congressional
Action to your US representatives and US senators.  (If you do not know who
your senators and representatives are, go to www.congress.org and type in
your zip code in the "Take Action" box.  This will lead you to your
federal, state and local elected officials' contact information, such as
name, address, phone and email.)

Letter suggestions:  If you find that writing about your illness is too
difficult, simply write a brief paragraph stating that you are the
Senator/Representative's constituent, ill or disabled, or have a family
member/friend ill or disabled with this disease and would appreciate if
they would review the attached Request for Congressional Action.  Ending
with a statement such as, "Please let me know what you can do to help
people like me with this disabling disease achieve these goals," not only
encourages a response, but suggests the reader at least take a glance at
the content in order to respond in an informed manner.

If you also want to target the Senate Committee on Appropriations, and in
particular its SUBCOMMITTEE on Labor, Health and Human Services, Education,
and Related Agencies:

The members are as follows:
Senator Arlen Specter (Chairman) (PA)
Senator Thad Cochran (MS)
Senator Judd Gregg (NH)
Senator Larry Craig (ID)
Senator Kay Bailey Hutchison (TX)
Senator Ted Stevens (AK)
Senator Mike DeWine (OH)
Senator Richard Shelby (AL)
Senator Tom Harkin (Ranking Member) (IA)
Senator Daniel Inouye (HI)
Senator Harry Reid (NV)
Senator Herb Kohl (WI)
Senator Patty Murray (WA)
Senator Mary Landrieu (LA)
Senator Richard Durbin (IL)