CONTINUATION OF EXCERPT SENT 11/4/96.
"POST POLIO AND POST M.E." BY JANE COLBY
Right Back in 1970, it was shown by Gatmaltan, Chason and Lerner
that when mice infected with Coxsackie B3 were forced to swim in a warm
pool, the virulence of the virus was drastically augmented. In fact, viral
replication was augmented 530 times. This did horrendous things to the
animals' hearts. We all know that to play squash with the flu can lead to
heart attacks. Much the same danger can be courted by undertaking hard
exercise with M.E.
In 1988, Reyes and his colleagues exercised mice suffering from
Coxsackie B3 myocarditis - inflammation of the heart muscle caused by the
virus. They showed that the effect of exercise on the production of the
neurohormones which regulate immune response and inflammation led to an
increase in susceptibility to Coxsackie virus infections - the host
response was altered in favor of the virus.
Roger Loria, discussing not only these very grave findings, but
also those of Jamal and Hansen in 1985, who reported that abnormal
single-fiber electromyographs (muscle graphs) were evident in 40 patients
with postviral fatigue syndrome (PVFS, analogous to M.E.), 35 of whom had
a Coxsackie infection, said: "These observations, as well as the recent
interest in Postviral fatigue syndrome (M.E.) may have considerable
application."
The year in which he said this was 1988. We seem still to be
waiting for someone to apply them.
The treatment of choice for those with post-polio is: "adequate
rest, energy conservation, the pacing of activities, and reducing physical
and emotional stress."
What on earth will happen in 30 years' time to children now
getting M.E. in a climate where they are disbelieved and told to push
themselves through the pain barrier? The condition "post-M.E." which we
may already be seeing in adults, could well await them with a vengeance.
The seriousness with which we take M.E. ought to parallel the
seriousness with which we regarded polio. Byron Hyde and his team speak
for us all:
"There is a myth among large numbers of physicians...that this is a short
term illness. We have reviewed the literature and can find no published
study that supports the thesis that M.E./CFS is an illness of a short
duration...
"Clinically, after the first year of illness, we have seen recoveries, but
they have been the exception rather than the rule. We attempted to verify
this and asked our 1,826 respondents to note the degree of their recovery
over the period of their illness. Our survey group's average length of
illness was approximately seven years.
"The findings...demonstrate that, in this entire group, there has been
only a 2% recovery. The 2% total recovery of treated M.E./CFS patients
suggests that the large number of pharmaceuticals, alternative medicines
and various treatments used have been largely ineffective."
Dr. David Bell, a clinical instructor in pediatrics at Harvard
Medical School, has noted that from a group of 40 children with M.E.,
those with less severe symptoms, perhaps not surprisingly, were the most
likely to have "recovered" three years later. Those children who were the
most ill at onset "were in general ill three years later."
That was in 1989. It is not known whether symptoms will recur in
the distant future. But two adults being studied by Dr. Bell's team had
been ill as teenagers, "recovered" after one year, but "subsequently
developed the same symptoms up to 20 years later."
As we shall see in further chapters [of M.E.-The New Plague] the
way in which we live our lives may well affect both the extent and the
likelihood of a return of symptoms. But people who do not know of its
potential to cause later trouble are not being given the chance to take
this step.
We now know that M.E., or atypical polio, is a serious and
devastatingly debilitating, multi-system malfunction leading to such
profound weakness in some children that they are unable to speak and have
to be tube-fed. There is accumulating evidence to suggest that it is
potentially a life-long condition.
However,[unlike those with polio], these children can breathe;
enteroviruses have an affinity for certain tissues and many do not attack
the respiratory centra causing death.
In spite of the enormous body of evidence accumulating which links
M.E. and polio, we are still seeing many M.E. patients disbelieved,
exercised and treated as if it were only their own mental set which
militated against recovery.
Is this simply because we cannot actually point to rows of coffins
and iron lungs?
[NOTE: Judith Curran had had FM/CFS for 32 years, according to newspaper
reports. She was about my age and had like me began having symptoms in
1961, two years after the Puento Gordo M.E.epidemic, which was found in a
door to door survey to affect 160 people in that small town. T.S. Eliot
contracted a flu in Barbados where he wintered in the same year. He never
quite recovered, and after trips to Morocco to escape the London smog he
died of bronchialitis four years later. During these years he required two
canes, and friends said that the great man who had written his poetry
"simply was not there". Source: "Eliot's New Life" a biography of T.S.
Eliot's later life.
Judith Curran died a few months ago with the help of Dr.
Kevorkian. Since her death one CFS related internet group has recorded
more that 32 deaths in individuals who have this disease. Many died of
pulmonary infections, ruptured spleens, medical abandonment, and suicide.
It is an excruciatingly painful disease. Even for those who cannot talk or
ask for pain medications. M.E./CFS is a human rights issue, which should
be addressed on a global scale.]
REFERENCES:
1. Hyde B, et al.: epiemiological Aspects of M.E./CFS/PVFS.
Ottowa, Canada: Nightingale Research Foundation, 1994.
2. Munsat TL: Poliomyelitis - mew problems with an old disease. NEJM
1991;324:1206
3. Bruno RL, Frick NM, Cohen J: Polioencephalitis, stress and the etiology
of post-polio sequelae. Orthopedics 1991;14:1269-j1276
4. Loria RM: Host conditions affecting the course of Coxsackievirus
infections. Coxsackieviruses - A GEneral Update. Mauro Bendinelli, Herman
Friedman, editors. New York: Plenum, 1988
5. Bruno RL, et al.: Pathophysillogy of a central cause of post-polio
fatigue. Ann NY Acad Sci 1995;753:257-275
6. Bell DS: CFIDS in children - Part 1: Presentation and diagnosis. CFIDS
Chron 1989;Jan./Feb.:5-8
