NOTE: This message was originally in conference "INTERNET - E-MAIL AREA"
      and was copied here by Tom Mckeever.
From: Eddie Bollenbach 
To: Multiple recipients of list POLIO 
Date:         Wed, 5 Jun 1996 17:46:59 -0400
Subject:      ATTENTION: MARCH OF DIMES UPDATE!
 
List Readers:
 
This is to update everybody about the work Ron, Tom, and I have been
doing over the past coupla 4 weeks to try to get the March of Dimes
to provide more accurate and helpful information on their Web page.
The strategy was to approach them in a non-threatening way, at least
until we found out what we wanted, which was the name of the person
or persons who have authority and responsibility for the Web page.
Ms. Greenup is this person, and I have spoken to her, although not
about polio. She informed me that science writers interpret the
scientific literature and write the information on the page. She
also told me that they are now in the process of updating information
because "the stuff on the page is old". Ron did an excellent job
analyzing one paper they used (Ramlow). Dr. Laporte was a co author
and Ron contacted and spoke with him. Tom spoke with Dr. Bruno and
both he and I helped with the editing and strategy.
 
Anyway, the following letter tells them what we want and puts them on
the spot a bit. It remains to be seen what will happen, if anything.
I invite the comments of Ron and Tom and anyone else who wishes to add.
We don't know what the next step should be. I have been told that they
(MOD) get rather defensive when the subject of polio comes up. I had
a rather pleasant phone conversation with Ms. Greenup about how scientific
stuff gets changed on their information pages. She invited me to send
suggestions. And, she said, they welcome new information from researchers.
I'll bet she was real surprised when my name showed up on the following
letter with the other two stiffs listed. I guess dinner and dancing
are out now, Oh well.
 
The text of the letter we sent follows.
 
Eddie
______________________________________________________________________________
 
 
Ms. MaryAnne Greenup                                    May 29, 1996
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, New York 10605
 
Dear Ms. Greenup:
 
        We are individuals with Post Polio Syndrome (PPS) who became
acquainted on Internet groups related to PPS.  There has been some
discussion in these groups of the March of Dimes World Wide Web Page
which gives information about PPS and Post Polio Muscular Atrophy
(URL cited below). It is our opinion that the MOD PPS Page seriously
understates the problems created by PPS.
 
        As currently written, the Page contains erroneus statements and
gives a falsely optimistic projection of the problems of PPS.
Information like this can discourage polio survivors who are
experiencing new symptoms from consulting with physicians, from
obtaining informed and effective care from physicians, and from
making the lifestyle changes that are necessary to minimize the
disability that can be caused by PPS.
 
PROBLEMS WITH THE WEB PAGE AS CURRENTLY WRITTEN:
 
        The information on the page is primarily taken from Ramlow et al
1992, an epidemiological study funded by MOD (2). Ramlow et al claim that
previous clinical studies had overestimated the frequency of PPS among
polio survivors.  We will not dispute this point; determining the true
frequency of PPS is problematic due to widely varying definitions and
information sources.  Our criticisms come from two sources.  First, the
MOD PPS page misstates the findings of Ramlow et al, making PPS seem
less serious than the article reports.  Second, the Page uses Ramlow et al
as a source of information not only about frequency of PPS, but also about
the severity of the symptoms of PPS.  While Ramlow et al may be right in
criticizing clinicians for their epidemiological conclusions, it is clinical
(not epidemiological) studies which are best able to estimate the degrees
of disability which are caused by PPS.  The questionnaire survey used by 
Ramlow
is a crude measure of severity  of disability, even if it had been summarized
correctly.
 
SPECIFICS WHICH SHOULD BE ADDRESSED:
 
        First, the MOD Page states that "the incidence of [PPS] symptoms
peaks at 30 to 34 years after the initial polio infection."  This is an
obvious misreading of the Abstract of Ramlow et al, which states "The
strongest determinant of post-polio _onset_ was the length of the interval
following the actual illness, with incidence peaking at 30-34 years."
(emphasis added.) The interpretation that _symptoms_ peak at 30-34 years is
wrong. This implies that symptoms, after 34 years, are either relieved or
get no worse. PPS symptoms get worse after their incidence, sometimes
much worse.  The Page fails to recognize or report this very important fact.
 
        Second, the Page states "PPMA is seldom disabling. ...  Dr.
LaPorte's study [Ramlow et al] found that only about 20 percent of PPS
patients reported a need to use aids for mobility or breathing."  The 20%
figure seems to be a misstatement of Ramlow et al's report on changes of
"impairment status."  "The impairment status of more than three fourths of
the cases did not change from the time of their recovery from the acute
illness to the present despite the onset of late muscle weakness" (Ramlow
et al p. 776).  Impairment status is a very crude measure of disability.
Impairment status is only changed when one _begins_ to use 1)ambulatory
aids, 2) a wheelchair, 3) a respirator, or 4) stops working due to
disability.  A woman who was formerly able to walk 20 miles and can now
only walk 20 feet, but who does not use a cane, has not changed her
impairment status.  By the writer's reasoning, she was not disabled by
PPS.  Impairment status is a very poor measure of disability.  _Many_ more
people are disabled by PPS than would show up on Ramlow et al's measure
of changes in impairment status.
 
        In fact Ramlow et al reports a great deal of disability caused by
PPS.  78% of all subjects reported at least one new symptom during the
last 10 years, 42% report a new impairment in their daily living, 40%
report new joint pain, 35% report new muscle weakness, 33% report new
muscle pain, and 32% report new fatigue.  All of these are disabling
conditions.  Ignoring these statistics while choosing to report the
smaller "impairment status" figure distorts the facts of disability caused
by PPS.
 
        Ramlow et al report that only about 21% of the above group have
made new use of mobility or respiration aids (despite the reports of
increased disability).  In a positive tone, they summarize this by
saying that 79% did not report new or resumed use of aids for
mobility or respiration.  Given the clinical knowledge we now have
regarding PPS and the probable denervation/reinervation etiology
(which Ramlow et al themselves accept) an important question arises:
Should more people reporting new symptoms be making use of mobility
and respiratory aids?  It is very difficult for many PPS people to
come to terms with their new disabilities or make timely
adaptations to maintain a high functional level.  Clinical studies
have stressed the importance of lifestyle changes including the use
of aids for mobility and respiration.  Ramlow et al report the
failure of many to accept those changes as evidence _against_ the
severity of PPS disability! This ironic result is a disservice
to the many people with PPS whose well being would be improved if
they were _encouraged_ to accept such modifications rather than being
informed that they weren't needed.
 
        One final factor which was overlooked on the MOD Page: For those
of us with relatively severe residual disability from polio, even the most
gradual increases in impairment can have drastic effects on our wellbeing.
The reality of increased disability, both among severely and less
severely impaired polio survivors, is unquestionable to the group with
which we have been in contact on the Internet.
 
OUR REQUEST:
 
         At a minimum we request that the erroneouus statements and
conclusions be removed from the MOD PPS Page.  Even more, we would
like the MOD Page to be in the forefront of current clinical practice
promoting the information necessary to reduce the disability and
extend the functional lives of those who are experiencing symptoms of
PPS. Many of us are professionals and researchers, and would be pleased
to provide MOD with citations and summaries of the relevant clinical
research, and/or pointers to Internet sites with PPS information.  We do
not doubt that MOD's intent was to support polio survivors by supplying
useful and suitable information to them.  We respectfully submit that the
MOD PPS Page can be improved in that regard. We would be glad to help
improve it. We ask that your science writers, in updating its information
on the March of Dimes Page, be provided with this communication to help
them in their attempt to inform polio survivors of the realities and
problems faced by many of them.
 
        Thank you for your consideration.
__
Ron Amundson PhD
University of Hawaii at Hilo
ronald@Hawaii.Edu
 
Edward Bollenbach MA
Northwestern Conn. Community/Technical College
Bollenbach@commnet.edu
 
Thomas A. Dempsey, JD
American Benefit Consultants
dempt@eskimo.com
 
-------------------------------------------
 
1.  March of Dimes PPS Page:
    http://noah.cuny.edu/pregnancy/march_of_dimes/polio/pstpolio.html
 
2.  Jonathan Ramlow, Michael Alexander, Ronald LaPorte, Caroline
Kaufmann, and Lewis Kuller, "Epidemiology of the Post-polio
Syndrome," American Journal of Epidemiology 136, 1992, pp. 769-786.
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