Is ME New Variant Polio?
© Jane Colby
'Science is about the
pursuit of truth. That always threatens someone.'
We talked about empires. If we look at
history, all empires fall. They all collapse. When the viral
connection, and in particular, the link between classic ME and the
poliovirus family, is properly accepted, ME will have to be granted
independence, set free from the fatigue empire.
I have no idea whether that empire will
collapse, or march off to lay siege to other 'fatiguing' conditions,
but the empire is fighting back. As is the habit with empires
generally. Nevertheless, as Professor Bruce Carruthers, co-editor of
the Myalgic Encephalomyelitis International Consensus Primer for
Medical Practioners explains: 'While it has always been
essential, it has now also become urgent to segregate the subset that
we are calling ME more clearly.' Urgent because 'otherwise, the
all-inclusive umbrella of CFS […] will continue to dilute the
results of any investigations and maintain the pervasive confusion
resulting when biopathological kinds are mixed indiscriminately.'
So where am I taking you in this book?
Is it safe? Is it reliable? If you were concerned that the link with
polio is some kind of fantasy, there is ample evidence from many
sources; from history, from present-day scientists, and from patient
accounts. Patients' own words make clear whether they have classic
ME, which we'll call New Variant Polio for argument's sake, or
whether they have something different. More and more tests are
becoming available to identify that difference. But at the moment, a
wide variety of patients are boxed together as CFS because of woolly
diagnoses. Brain tumours and other cancers have been missed because
of such poor science. It really is a dangerous game we play by
lumping people together, not investigating them properly, and trying
to treat them all the same.
Now. Imagine a world where CFS doesn't
exist. I don't mean a world where no-one is ill. I mean a world
without the name Chronic Fatigue Syndrome. Well, of course, there was
such a world, only a few decades ago. In those days there was ME,
with which I was diagnosed myself. And there was other stuff.
Diseases that cause fatigue. Heart disease, cancer, leukaemia, post
viral debility, multiple sclerosis... No-one lumped those conditions
in with ME. ME was separate. As it must be again. And if there is to
be a new name, I believe it should reflect the link with polio.
Once Upon A Time...
...when the world was young and CFS
wasn't even a gleam in a psychiatrist's eye, a strange twist of fate
led doctors to decide that they were seeing a totally new virus.
Yes, we've been there before! The year was 1948. A polio-like illness
in New York State prompted scientists to use tissue culture (a new
technology) to grow the infecting virus. What they succeeded in
growing looked to them like a new virus, and they called this virus
Coxsackie after the small town up the Hudson River where it was
found. The disease was considered to be Atypical Polio, because its
symptoms identified it as a kind of polio, despite the virus being
apparently different. (The name ME was coined years later, after a
hospital epidemic in England.)
Nowadays we know that what was then
thought to be a new virus was simply one of a large family of over 70
members that includes polio: this is the enterovirus family, or bowel
viruses. There are in fact three polioviruses, which were named
Poliovirus I, II, and III. How different things would be now if the
technology of that time had identified the family link. ME would have
stayed within the polio family, by name. And would we ever have seen
the totally confusing title 'non-polio enteroviruses' in common use?
For goodness sake!
As far back as 1988 in the Journal
of Hospital Infection, the great microbiologist and colleague of
mine, Dr Elizabeth Dowsett, pointed out that all the enteroviruses
share the physical, chemical and epidemiological characteristics of
polioviruses. Being so closely related, they go for the same
receptors in the body. A virus has to get into a cell through a
specific receptor on the wall of that cell. This is an area of the
cell wall to which a virus can bond chemically, rather like a Yale
lock and key mechanism.
Enteroviruses have an affinity for
neurological cells. They have what is called a 'tissue affinity' and
they also have this affinity for muscle, pancreatic and other cells.
Since they can all use the same receptors, whichever enterovirus
family member gets there first excludes the others. They are in
competition with one another.
When you have a competition and you
remove one of the competitors, it's not hard to guess what happens
with the rest. Yes, you've got it. What happened in the case of
enteroviruses was exactly that. As vaccination protected people from
polioviruses, there were worldwide epidemics of the other
enteroviruses, which found the field clear for them. Epidemiology
(the study of the behaviour of diseases in the community) reveals
synchronisation of ME epidemics with these enterovirus epidemics; the
huge 1983-89 pandemic (global epidemic) is a good example.
Let's look at it in more detail. In a
paper published in 1994 by the Nightingale Research Foundation in
Canada, Byron Hyde MD and his colleagues point out that this 80s
pandemic period did not stop after one or two years. It continued
'like the storm of heavy paralytic poliomyelitis years' at the end of
the 40s before polio immunisation. It 'raged in a like manner for an
unprecedented period of six years'. The particular enteroviruses
going around in the 80s were our old friends the Coxsackies; B3,
together with B5 in some countries.
It's worth staying with that paper for
a bit longer. Comparing the behaviour of polio and ME the authors
note: 'We see the same two typical features... a) a decreasing
incidence from January to reach a summer low, then b) the strong late
summer increased incidence, peaking in the August to October period.'
How many children are misdiagnosed as suffering from anxiety, school
phobia and the like, just because they developed ME during the Autumn
school term? 'Must be the stress of the new term, or starting a new
school.' Hallo? It's normal for this disease to exhibit a seasonal
pattern. And they still don't know?
People may think they have flu when
they actually have an enterovirus infection. In most ME patients
there is a short 'minor illness', sometimes described as a flu-like
illness, which is then followed by the chronic disabling 'major
illness' of ME. But rather than being flu that started it off,
according to Hyde it is 'in reality […] identical to and has all of
the features and variability of the 'minor illness' of missed or
So to recap; for historical reasons,
the names given to the various enteroviruses did not
reflect their family relationship. Doctors would often diagnose
polio from how the patient presented, but eventually conclude that
they were seeing an 'unusual' poliovirus. Well, in sense, they were;
even though the name given to the virus might be different, it was
just another family member. Their clinical acumen was spot on, even
though they lacked today's technology to identify the whole family of
culprits the way we do now; by number. Enterovirus 68 is a
good example, causing worry and fear among parents in California as I
write. Children have been paralysed. Around the world, the media have
speculated on whether polio is mounting some sort of comeback, just
when there has been such talk of eradicating it worldwide. But as Dr
Dowsett once said, we can't claim to have eradicated polio until we
eradicate ME. They are so closely related.
In a personal email, Byron Hyde
explains: 'It was in 1983-1989 that we had the last significant
epidemic period of enterovirus-induced illness in North America - at
least one of any magnitude. I have lectured about this coming
epidemic for years and have been expecting it since 2005 since it
seems to occur every 20-30 years. This one with paralytic features is
unusual in that it started in winter and that usually does not
happen, even in California. You will note that none of the
non-paralytic cases are mentioned; they are the
ME patients. As well as the paralysed individuals, I would like to
hear about their cohorts who have fallen seriously ill.'
He goes on to describe a spectrum of
disease and severity: 'All enteroviral epidemics that are associated
with paralytic features also contain patients with a wide variety of
morbidity: from paralysis - to severe and chronic exhaustion, with
chronic encephalitic features that can be well documented on brain
SPECT with appropriate software - to those that get well in a few
days and have no permanent sequellae.'
You would hope that the medical
establishment would link this new 'polio-like' illness with ME. Bang
their heads together, someone please? The Californian children we
have so far heard about have sadly not recovered from their
paralysis, unlike children with ME, who may experience temporary
paralysis or muscle weakness until the body heals. For each person's
response to the virus will be different, as in all viral illness.
I'll discuss that in another episode.
I do find myself asking; would doctors
have taken poliomyelitis seriously if it weren't for the fact that so
many children died, or couldn't breathe at all unless placed in a
huge machine (an 'iron lung') to do their breathing for them? Those
terrible, undeniable manifestations may have been all that stopped
poliomyelitis from being considered psychosomatic. Even then, Dr
Dowsett told me of a child with polio who was smacked for not getting
dressed until someone finally realised; her poor little arms were
If you'd like to be alerted when Episode Six is here contact Jane.