ME - The New Plague 2
Is ME New Variant Polio?
Copyright © Jane Colby
'Science is about the pursuit of truth. That always threatens someone.'
Lewis, ITV Drama
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 abortive poliomyelitis.'
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 paralysed.
If you'd like to be alerted when Episode Six is here contact Jane.