There is Lots of Ongoing Research on Meniere's Disease
(Rumors to the contrary are totally unfounded.)
Some misinformed patients have taken to
criticizing the medical community for a lack of research done on
Meniere's Disease, attributing this supposed lack of research to the
lack of a celebrity spokesperson for Meniere's Disease and the belief
that Meniere's Disease is an orphan disease that attracts little
attention or sympathy. This is completely untrue, and these
misinformed patients have apparently never researched the world's
largest depository of medical research,
PubMed, at the U.S. National
Institutes of Health (NIH). In fact, there is much ongoing
research on Meniere's Disease. Here is the proof:
A medical journal article containing the term "meniere
OR meniere's" has been added to PubMed an average of every 2.7 days
for the past 10 years, almost of them relevant.
134 medical journal articles were added to
PubMed in the past year.
On February 1, 2006, we searched
PubMed for all medical journal
articles in the database containing the term "meniere's OR meniere"
and with a PubMed "entrez
date" within the previous year. There were exactly 134
articles, almost all of them relevant.
That's one article every 2.7 days! You can do this search
right now, yourself, for the previous one year from today.
Click here. How many articles did you find?
275 medical journal articles were added to
PubMed in the past two years.
On February 1, 2006, we searched
PubMed for all medical journal
articles in the database containing the term "meniere's OR meniere"
and with a PubMed "entrez
date" within the previous two years. There were exactly 275
articles, almost all of them relevant.
That's one article every 2.7 days! You can do this search
right now, yourself, for the previous two years from today.
Click here. How many articles did you find?
745 medical journal articles were added to
PubMed in the past five years.
On February 1, 2006, we searched
PubMed for all medical journal
articles in the database containing the term "meniere's OR meniere"
and with a PubMed "entrez
date" within the previous five years. There were exactly 745
articles, almost all of them relevant.
That's one article every 2.4 days! You can do this search
right now, yourself, for the previous two years from today.
Click here. How many articles did you find?
1,360 medical journal articles were added to
PubMed in the past 10 years.
On February 1, 2006, we searched
PubMed for all medical journal
articles in the database containing the term "meniere's OR meniere"
and with a PubMed "entrez
date" within the previous ten years. There were exactly
1,360 articles, almost all of them relevant.
That's one article every 2.7 days! You can do this search
right now, yourself, for the previous two years from today.
Click here. How many articles did you find?
PubMed contains nearly 6,000 medical journal
articles.
On February 1, 2006, we searched
PubMed for each and every medical
journal articles in in PubMed containing the term "meniere's OR
meniere." There were 5,889 articles, almost of them relevant. You can do this search right now, yourself.
Click here. How many articles did you find?
Note: if the "limits" box is checked (and
therefore you got fewer than 5,889 articles), UNCHECK the limits box
and click on "go."
In addition, there are numerous
medical associations whose members practice and study Meniere's
Disease, and these societies often hold symposiums at which experts
present current papers describing their studies. A few of them
are:
The
Fourth Instructional
Workshopof the European
Academy of Otology and Neuro-Otology (EAONO)
will be held in Palma de Mallorca, Spain, on November
14-17, 2008.
The
Third Instructional Workshop of the European Academy of Otology
and Neuro-Otology (EAONO) was held in Cologne, Germany, September
21-24, 2006.
This symposium is held every five years or so,
and is attended by Meniere's Disease
doctors and researchers from all over the world.
The 6th
International Symposium on Meniere's Disease and Inner Ear
Homeostasis Disorders is scheduled for April or October, 2010, in
Kyoto, Japan.
The 5th
International Meniere's Disease Symposium was held in Los
Angeles April 2-5, 2005, and was hosted by the House Ear Institute.
Among the objectives was to review new discoveries that have been made
in basic and clinical research since the Fourth International
Symposium on Meniere’s Disease held in Paris, February, 1999.
This is not to say that we can ever have enough
awareness and research, just that we are not so ignored as some folks
would have us believe. Meniere's Disease is still hardly a
household term (contributing to the discrimination against Meniere's
patients by employers and many others), and despite the current
research efforts, the cause and cure of Meniere's Disease are still
unknown. Much more needs to be done. But we have *not*
been "blown off" by the research community. No matter who tells
you otherwise.
Some of our "Famous
Patients" have endorsed donations to the American Academy of
Otolaryngology-Head and Neck Surgery Foundation. Click
here for more information.
How to Use PubMed and the Internet
To Conduct Your Own Medical Research on the Web Be sure to discuss your research with your
physician.
Research Medical Journal Articles
at PubMed
Those of us who are interested in medical
research on Meniere's Disease (or any other medical subject) can
research PubMed at the National Library of Medicine (NLM) at the U.S.
National Institutes of Health (NIH). PubMed includes over 15
million citations for biomedical articles back to the 1950's.
You will be prompted with an
opportunity to have alerts of new articles that result from your
search emailed to you, as often as you select -- perhaps daily.
Note: your email system may treat the
messages as spam, so check your spam folder.
Find the Full Text of Medical
Journal Articles
PubMed may have only a citation to a medical
article, but usually it also has an "abstract" (short summary).
It is always best to get the full text of an article.
PubMed. Sometimes there is a link to
the full text article in the PubMed record, but there may be a high
fee charged by the medical journal publisher to access the full text.
Findarticles.com. The full text of some
medical articles may be found at Findarticles.
Local libraries.
Check out local public libraries, medical school libraries, and
hospital libraries. ASK what they have to offer in the way of
medical research.
Most medical school libraries and hospital medical
libraries permit public access, although public access is sometimes
restricted to certain hours.
Even if these libraries do not have the full text
article on hand, they will be able to obtain the journal in which the
article appears through an inter-library loan at no or low cost.
Do not be shy!
In some places, by special arrangement of your
public library or your state government, you may get access to private
databases (such as Infotrac) from the comfort of your own home (or
your library computer stations) via the Internet using your library
card number.
For example, here
is a list of databases accessible to patrons holding a Denver Public
Library card.
Consumer health libraries.
U.S. National Institutes of Health have a
listing
of consumer health libraries in the U.S. and Canada providing services to local
residents -- a possible resource to finding the full text of articles.
Authors. Most authors of published
articles will send reprints to you upon request; call, write, or email
their offices.
Your doctor. You might ask your own
physician for a copy of an article; she might happen to have it on
hand, and in any event will have a means of obtaining the article; it
would be fair to reimburse her for any fees she will incur in
obtaining copies of articles for you.
Commercial services. There are
services that will copy and send medical journal articles to you.
Loansome Docat PubMed can get the full text for you via a local library;
charges vary.
Medscape.Medscape is another source
for full-text copies of articles. Registration is required to
use Medscape but is immediate and free. After registration,
search PubMed using Medscape. When you view an abstract at
Medscape, you will be offered a link by which to order the full text
of an article by paying a fee, which is likely to be US$35 or more,
plus shipping.
How to Search PubMed
Search for anything. Go to
www.pubmed.gov to search
anything at PubMed at NIH/NLM. You will find links to help and
to a tutorial in the left column. PubMed recognizes Boolean
logic. Quick tip: connectors must be in all capitals
("and" and "or" must be "AND" and "OR") to be recognized as
connectors.
Search for every Meniere's Disease medical
journal article. Click
here to search the entire PubMed database for "meniere's OR
meniere." You should retrieve at least 5,863 articles.
(Be sure "limits" is unchecked; if it isn't, uncheck it and search
again.)
Search for the latest Meniere's
Disease medical journal articles. Click
here to search PubMed for "meniere's," with a PubMed
entrez date going back 90 days from today. There are usually
about 30 articles published every 90 days, an average of about one
every three days.
Use Our Pre-formatted PubMed
Searches
Search using our preformatted searches. We
have preformatted popular searches for you. Be sure that
"limits" is unchecked; if it isn't, uncheck it and search again.
The following links will take you to the latest research at PubMed on
the following topics:
Arrange for the
after-death donation of your temporal bones for research through the
(U.S.) National Temporal Bone
Donor Program. The temporal bones contain the organs of
hearing and balance in the inner ear.
More Research Resources
Educational consulting service. P.J.
Haybach, R.N., M.S., the author of the best
book about Meniere’s Disease for patients, ”Meniere’s Disease
— What You Need to Know,” has launched a new educational consulting
service for vestibular disorders, including Meniere’s Disease. The
details are available at her website.
It strikes us that this innovative service should be extremely useful
to almost every Meniere’s Disease patient and that the fee may well be
the best money that a Meniere’s Disease patient could spend! (This is
news, not advertising, and the MDIC (MenieresInfo.com) receives no
compensation for this information.)
The U.S. government has a website for
information on clinical trials:
www.clinicaltrials.gov.
These clinical trials are usually conducted by the
NIH (National Institutes of Health). In the usual clinical
trials, there are two groups, the test group and the control group.
The test group is treated in some way. The control group is
"pretend-treated," usually with a placebo ("fake") drug. Studies
may last one year, more or less. The results of both groups are
compared to see whether patients in the test group improved
significantly compared to the control group. You might or might
not like to participate in a study. Remember, one group
will always be given placebo ("fake") treatment. However,
control groups are necessary in research and patients in the control
group make very useful contributions to medical science. If you
are interested in participating in a clinical trial, talk to your
doctor.
The International Federation of
Pharmaceutical Manufacturers and Associations (IFPMA) has a website
for searching for clinical trials:
www.ifpma.org/clinicaltrials.html.
This website searches the U.S. NIH
site,
http://www.clinicaltrials.gov, and in addition searches other
information sources at the same time, providing all the results
together.
You will be prompted with an
opporunity to have alerts of new articles that result from your search
emailed to you, as often as you select -- perhaps daily.
Note: your email system may
treat the messages as spam, so check your spam folder.
Findarticles. A
great website to find medical articles -- and the full text of
many medical articles, provided free. Click
here to search Findarticles for all of its free medical
articles on Meniere's Disease.
Books on Meniere's Disease.
(We do *not* get a commission.)
"Meniere's
Disease -- What You Need to Know," by P.J. Haybach, R.N. Published
by VEDA, the Vestibular Disorders Association. Every Meniere's
Disease patient should read this book, and so should those who know
them. ($24.95.) See Haybach's article about Meniere's
Disease in NurseWeek here.
More books and short publications by
Haybach are described here.
Famous
Meniere's Disease Patient Joni Woelfel has authored a book,
Tall in Spirit: Meditations for the Chronically
Ill, reflecting her experiences with Meniere's Disease. We
found
this link to her book. (We get no commission.)
Free book! "Vertigo and
Dizziness" is available free for the download courtesy of author Lucy
Yardley and the nice folks at the (UK)
Meniere's Society.
Click
here.
Book: "My
Children, Listen" by Catherine Helene Toye, M.D. (1998). A
doctor becomes a Meniere's Disease patient when she awakes one morning
in the midst of an acute attack. Her life would never be the
same again. Read excerpts
here.
Meniere's Disease, by Jeffery P.
Harris. This pricey (about US$ 200) book has a publication date
of 1999; 418 pages, hardback.
Treatment Options for Meniere's
Disease-- Endolymphatic Sac Surgery: Do It or Don't Do It and Why. Pricey book by I.K. Arenberg, famous Meniere's
physician who invented the Arenberg endolymphatic sac shunt.
Worth finding at a library and reading if you are considering any kind
of endolymphatic sac surgery.
Search for Meniere's books online. Search on "meniere." Some of the books listed
are old, unavailable, and/or very pricey. What to do? Check with
public libraries, hospital libraries, medical school libraries, and
with your physician.
Click
here to search Barnes and Noble for "Meniere's Disease." (We
do *not* get a commission.)
Click
here to search Amazon for "Meniere's
Disease." (Searches even within the text of many books.)
(We do *not* get a commission.)
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