The Future and Chronic Fatigue Syndrome (ME/CFS) : What You Can Do.
"It takes a Community - An Active Community"
Why Your Action is Needed
The Feds and ME/CFS: If you think that because you're
sick the federal government gives a hoot think again. Most diseases
do have a slew of federally funded researchers working away at their problem but
not chronic fatigue syndrome (ME/CFS). The amount of funding this disease
receives from the federal government is simply atrocious.
Consider the
following;
- Chronic fatigue syndrome has high economic costs (@20 billion/year), is
relatively common (1,000,000 + effected in the US), has low diagnosis (20%) and
high disability rates, and is a chronic and often lifelong condition….but has
been almost completely ignored by the federal government.
- Chronic fatigue syndrome (ME/CFS) affects more people (@1-4,000,000) than breast
cancer, AIDS, multiple sclerosis combined (@570,000) yet receives yet less than
1/10th of one percent of the funding ($4,000,000) that those diseases do ($3,900,000,000) (NIH).
- Weighing in at about 206th of the 214 diseases, disorders and conditions
funded by the National Institutes of Health (NIH) chronic Fatigue Syndrome
(ME/CFS) is at the very bottom of the governments funding priorities .
- Chronic fatigue syndrome (ME/CFS) causes higher economic costs than asthma yet
receives about 60 times less funding (@$4,000,000 vs @$250,000,000).
- Several diseases that affect fewer than 50,000 people receive considerably
more research funding than chronic fatigue syndrome does.
The verdict is clear; the federal government doesn't give a darn about your
illness. In fact you could spend the next 30 years suffering from this illness with
the federal goverment hardly raising it's finger to help you - a horribly dis-illusioning fact. But is that the final word? No it's not. The government can be made to care; many diseases that were
ignored by the federal government for years now enjoy substantial budgets.
Despite its high prevalence rates and horrible consequences breast cancer was
one. It took the creation of powerful breast cancer advocacy groups to force the
federal government to focus on breast cancer but breast cancer research now
receives about $700,000,000 year in NIH funding.
When federal government moves it can move very powerfully; we are not so far
away from a significant research effort as the statistics might suggest.
But it will take action on the part of patients and their allies to force the
government to move.
Why Do We Care What the Federal Government Does?
Spending about 40 billion dollars a year the United States government is far and
away the greatest single funder of medical research in the world. With the
average well- designed research study costing several hundred thousand dollars
and with few private research funds available it’s simply unrealistic to expect
meaningful progress to occur within an acceptable time frame without federal assistance. Let’s not even mention
the other issues; the disability programs the government runs, its prominent
role as arbiter of medical opinion, the enormous role it plays in health care,
etc.
Like it or not the Federal government plays an enormous how this disease is
perceived, how well it’s funded, what treatment options ME/CFS patients
have...it simply can't be ignored.
What You Can Do
The nature of ME/CFS makes it difficult for patients to engage vigorously in advocacy
efforts. This makes it doubly imperative that we have strong national support groups aiding us. Our
history has shown that professional organizations are the only groups
with the energy, skills and ties to make a difference on federal level.
None of
the major events in ME/CFS history; the creation of NIH CFS research program,
the CDC scandal in the late 1990s, the Disability Ruling, the creation of the
Federal Advisory Committee on ME/CFS (CFSAC), the federally funded Media Campaign,
the recent Medscape Physician Education program or the latest CDC scandal
would have occurred without professionals advocating for ME/CFS patients.
Yet less than 5% of people diagnosed with this disease support these groups. By
not supporting them we are effectively ceding our influence in the federal arena
to officials and bureaucrats who’ve shown for decades that they don’t give a hoot about ME/CFS –
a very dangerous proposition.
TAKE ACTION
This section provides basic actions ME/CFS patients can take to create a better
future for their community. It is a starting off point rather than a conclusive
summary. Indeed the few opportunties presented say something important about the
state of our efforts in this area.
Support A National Support Group. Support the groups
that support us. Since the U.S. is the only country (besides Japan) that funds a
significant amount of research into this disease it’s particularly important that the US’s
national support groups be strong.
In the U.S. two national groups exist; the CFIDS Association of America (CAA)
and the IACFS/ME.
CFIDS Association of America - With a paid staff of 13
the CAA funds research, provides information and employs a lobbying
organization, the Sheridan Group, to look out for ME/CFS patients interests on
Capitol Hill. The CAA is the only group that consistently advocates for this
disease on the federal level and recently called the CDC on the mat for
squandering research funds. The CAA’s annual Lobby Day and Grassroots advocacy
center provide patients the opportunity to participate in federal advocacy. The
CAA recently created the first physician's education program by ME/CFS
physicians. Building the CAA into as strong an
organization as possible is absolutely essential to our goal of getting adequate
federal assistance.
The IACFS/ME - is a society for ME/CFS professionals
that recently opened its doors to patients. The IACFS/ME has been active under
the leadership of Dr. Nancy Klimas and lobbies for ME/CFS patients but has no
paid staff members. The group puts on the bi-annual international conferences
and sponsored the recent Pediatric Definition. It now provides a free
newsletter. The IACFS/ME is raising funds to hire its first staff member and is
currently creating treatment guidelines for this disease.
State and Local Support Groups
All Politics Are Local: Finding a Champion - One of the great goals in chronic
fatigue syndrome (ME/CFS) advocacy is to find a champion on the federal level
who can speak for us. Our champion in the 1990’s, Congressman John Porter, was
recruited to our cause by one patient. The next champion for ME/CFS will almost
certainly come the same way – one patient convincing one politician to help us
in our cause. Having the right person in the right place can literally transform
the chronic fatigue syndrome federal research effort.
Empower a Local Group – Despite the many issues facing ME/CFS patients groups that advocate at the state level are rare. The New Jersey CFIDS
Association set the standard for effectiveness when it teamed with the state of
New Jersey to produce and distribute a manual on ME/CFS (chronic fatigue syndrome) to physicians in the
state. From there the Manual spread to Vermont and has been translated into Spanish, making
it one of the few bright spots in ME/CFS state advocacy.
Other Opportunities to make a difference: