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Report
on the Saratoga Lyme Forum, May 21, 2012
(A Forum on Tick-Borne Diseases - What's NEXT?)
Many
thanks to Congressman Chris Gibson, organizers Chris Fisk, Holly
Ahern, keynote speaker Pamela Weintraub, and honored speakers.
As patients' support of this
event was overlooked, we’d like to publicly acknowledge the
dedicated volunteers from the Adirondack Lyme Disease Foundation
and the Capital Region Branch of Empire State Lyme Disease
Association, The Lyme Disease United Coalition and others!
"Your
News Now" (article below) completely overlooked the patients
by mistakenly stating that 500 medical and environmental
professionals attended. We counted several times to be
certain and there were 260 people in the audience; then with the
panel members and volunteers, the total was about 300 in
attendance. There were not many medical or other
professionals; indeed, when one speaker asked for a show of hands
of patients and loved ones of patients, most of the audience
raised their hands. Over 200 patients came, at their own
expense, from local areas and from New Jersey, NYC, Massachusetts,
Long Island, etc. The Forum speakers were informative, but
no immediate solutions were promised for patients!
Much
was said about needing more funding for research. Ironic,
because since when has "It's in the literature," been
the cry that helped us?
Of
course, research might get us closer to solutions, but no amount
of research will dictate a universal absolute and perhaps we
should stress that it should not do so!
For when the IDSA handed down their 2006 guidelines, an
illusion was created as if they were handing the guidelines from
on high and perhaps many of the establishment think the IDSA
guidelines are a law.
I
sat on the panel next to the very Honorable Congressman Chris
Gibson.
I
would like him to know what patients said to me.
Patient
A:
“Research
is fine, but to just give money to people who may not even help us
in the long run especially doesn’t do us any good right now.
Patients desperately need help today, now!”
Patient
B:
“Great
event, but if something isn’t done immediately, more and more
patients will never get well, more will die.”
Finally,
Patient C: “Doctors who do not treat us should be charged with
criminal negligence when the patient dies.”
We
talked with the man who said this and discovered he was a retired
police lieutenant and he almost died because he ran out of money
to pay for treatment. Fortunately he was able to continue
treatment, but he worries about people who aren’t as lucky.
With
all due respect and much appreciation for his efforts, Congress
Gibson needs to know that funding for research is not going to
afford any relief for the people who are currently struggling to
survive. Funding
for research will not even help the next few years of patients who
will be added to the list. If and when this
legislation should pass, it could be years, yes, years before we
would see any positive results from its passage. Please
consider that these steps have to occur for each research study
that is proposed and completed.
1.
Funds would have to be allocated, for the formation of a
committee, for expenses, for granting, and so on.
2.
Committees would have to be created, where people have to be
vetted and asked to contribute their time,
3.
Once a committee is assembled, then meeting times have to be
determined.
4.
Once the overseers of the funds are set in place, this committee
will spend time on deciding how the funds will be offered,
determined, granted, and distributed.
5.
Then the availability of these funds would be announced,
publicized.
6.
Then researchers, educators, and so on would have the opportunity
to apply for grants.
7.
Then the applications would be reviewed and the committee will
decide who receives grants.
8.
Then the grants would be awarded and
9.
The checks are then sent out.
10.
Then the checks would be cashed.
11.
Then research teams would be assembled.
12.
The various responsibilities are decided within the research team.
13.
The office and laboratory space are provided
14.
The times and days that the research team would meet and do the
research are decided.
15.
Then the research would finally begin.
16.
If human subjects are required, the long process of acquiring
subjects begins.
17.
Controls usually are required, the controls are set in place.
18.
Then finally the actual study begins.
19.
The processes are performed.
20.
The data are obtained.
21.
Then data are compiled.
22.
Results are determined and then reviewed.
23.
No small amount of time is then spent writing up the study.
24.
Then, most likely the grantees will have to report back to the
funding committee.
25.
They will likely have to get approval of their written reports and
their conclusions from the committee and also from others, such as
their department heads.
26.
Time goes by as the committee waits for approvals to submit the
final article to scientific and/or medical journals.
27.
The research committee waits, hopefully, for publication
acceptance.
28.
If published, the studies and the conclusions are interpreted,
discussed, weighed by the scientific community.
29.
The final work is either valued or devalued or kept in scientific
limbo where scientists, medical and other professionals will
perpetually argue about it.
30.
Until such time as another study is done with its purpose being to
either validate the outcome of the first study or invalidate the
first study completely.
Remember
please that the 30 or so step process will happen for each study!
We’ve
witnessed over 30 years of debate, an utter war over the Lyme
research already done. Patients can not wait for passage of
legislation that will only scratch the surface of the research
process, indeed, wait for legislation that can give no guarantee
that the funded research will help even one patient unless maybe a
patient was accepted in a double blind study- as long as he is not
the one given a placebo!
We
aren’t against this legislation, but we urge everyone to see the
reality of the processes. There
is a gap between this legislation and its ability to help patients
just as there is more than one gap between scientific study and
reality. And this scientific study-reality gap is important
because it further illustrates how research and studies are not
even close to being a solution for the immediate needs of the
patients.
The
first gap would be the in vitro versus in vivo dilemma where what
happens in a test tube or in the body of a mouse may not be the
same as what happens in the human patient. A second gap is
one of human, not error, but the degree of carefulness, where
laboratory researchers are endowed with a responsibility to be
overly rigid about every detail of a process. This second
gap when tests are done, or medicines are prescribed and taken in
a clinic or in a home, there is no constant monitoring by
scientific researchers. The result of the second gap is that
in reality, the outcomes may not be that similar to the laboratory
experience. The third gap is one of time. We have seen
how long it takes to just to have the results of a study. We
have waited patiently for the published studies of doctors who did
research that we wanted. (Fallon, for example) We have
seen scientific research to create new medicines, such as
Tigecycline end in confusion, delays and as far as I know,
non-use, therefore, once again, sadly, no help for patients.
We
at Empire State Lyme Disease Association would urge our
government, our Honorable Congress Members, and Senators to please
do not forget how many people are already suffering and yes, have
died due to the continuation of the Lyme wars, due to the
destructive fight between medical professionals, due to the
continued war over the treatments, and the ridiculous arguments
over diagnosis. Doctors must stop saying and/or believing,
“There is no Lyme here,” or “Lyme is over-diagnosed,” or
“Your test is negative, so you don’t have Lyme.”
Before anything else, can we FIRST try to get that to happen?
We
must, because while the cry is for more research and everyone
seems to love the idea, Congressman Chris Gibson, et al, what
about the cries of the patients?
This
is well beyond having compassion for the patients. It is
about saving the lives of children and all the people who have the
misfortune yet common experience of being bitten by a tick or
other vector of disease and then contracting a possible plethora
of diseases.
THIS
IS URGENT: The federal Lyme legislation that Congressman Gibson et
al are supporting has inserted a separate bill that they didn’t
write into their bill. This separate bill was originally
created by, written by and then requested by the Lyme Disease
United Coalition, the LDUC. We demand that the part of the
federal legislation that originally was the LDUC bill be taken out
of Congressman Gibson’s bill to allow it to revert back to a
separate bill that is NOT PIGGYBACKED onto any other bill!
In this way, this LDUC bill can be voted upon and perhaps passed
right away! Immediately!
The LDUC bill requires no federal funding, but it provides
for a requirement of the education of doctors with ILADS
information. In this way, all doctors will be alerted that
tick-borne diseases are common, that the tests are not reliable,
that patients cannot always recover easily, and that they may need
extended care.
We
all must think of things that can be done for immediate relief.
We must convince doctors that it is harmful to say and/or believe,
“There is no Lyme here,” or “Lyme is over-diagnosed,” or
“Your test is negative, so you don’t have Lyme.”
Can we also try to get that to happen? It doesn’t
seem that difficult. In 2002 NYS passed Resolution 2155
about Lyme disease. In 2002 the New England Governors also
passed a Resolution about Lyme disease. We should be
covering doctors’ office walls, hospital walls, and laboratory
walls with these Resolutions and perhaps with other official or
scientific documents. Perhaps the federal government would
pass a similar, updated Resolution as NYS and New England did in
2002?
Thank
you,
Eva
Haughie,
President,
Empire State Lyme Disease Association, Inc.
Your
News Now Time
Warner Cable. The power of you ™
Updated 05/21/2012
04:09 PM
Skidmore
hosts Lyme disease forum By: Web Staff
An all day forum at
Skidmore College aims to raise awareness about a growing problem
in the region: Lyme disease.
People
on the panel from Left to Right: Insurance representative, Empire
State Lyme Disease Association, Congressman Chris Gibson, and
Infectious Disease MD.
SARATOGA
SPRINGS, N.Y. -- An all day forum at Skidmore College aims to
raise awareness about a growing problem in the region: Lyme
disease.
Congressman
Chris Gibson served as honorary co-chair for Monday's "Lyme
Next Forum." The event brought together more than 500 health
and environmental professionals.
The
goal is to find better ways to prevent, diagnose and treat the
disease, which already affects several thousand people in New York
State. Some studies even suggest the amount of people with Lyme
disease and other tick borne illnesses is anywhere between 10 and
80 times higher than what's been reported. Many believe the reason
why is a lack of awareness.
"I
think to the extent that we can raise the level of awareness about
what parents or victims need to know, such as, you don't need to
have a bull's eye rash, you may have no rash at all. That just
some fairly rudimentary facts about Lyme disease will probably
help a lot of people," said Christina Fisk, a mother of a
Lyme disease patient and forum co-chair.
Some
of the key symptoms to look out for are extreme fatigue,
headaches, a rash and neck stiffness.
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EMPIRE STATE LYME DISEASE
ASSOCIATION
