IT'S THE IMMUNE SYSTEM, RIGHT?
Why am I not surprised that Mady Hornig and Ian Lipkin's research reveals that ME goes in stages? I've been telling people that since the 1990s. Indeed, it's the experience of most patients. But let's not jump the gun. Let's find out why this might be and see if it makes sense in terms of this new research.
For years, Dr Alan Franklin was regarded as the country’s foremost specialist in childhood ME. Unfortunately he is no longer with us. Who, now, remembers his three stages of ME? Those of us who worked with him do. I was privileged to be asked by him to edit some of his work.
Alan wrote: “The existence of ME as an organic illness dates back as long as records have been kept. It is now recognised in people of all ages, including children. The effect that this neurological disability can have can be quite devastating for the lives of young people. It must be taken seriously if children and students are to be given maximum help to recover some of their lost opportunities. [...]
“A marked feature of ME is the fluctuation of symptoms from day to day [in my previous blogpost I quoted from Ramsay who said the same] and the tendency for relapses and remissions over months. There is a combination of key symptoms that is remarkably similar from patient to patient: Post-exertional fatigue, malaise and cognitive dysfunction are invariably present. [...]
“Rest is extremely important in the acute stage of the illness when there is evidence of active viral infection and possibly other provoking factors. Following the acute phase patients should be encouraged to pace themselves and live within their energy levels. The criteria for this is that either cognitive or physical activity should not produce prolonged after-effects ie for hours or days. Patients should be encouraged to pace their energy expenditure and to learn to remain well within their capacity without exacerbating symptoms.”
He then goes into more detail.
It is possible to describe this illness in terms of three stages:
Stage One – Acute
[sometimes referred to as Toxic; patients say they feel 'poisoned']
Patient feels ill all the time. Any attempt at exercise is counter-productive. As in all acute illnesses, a drastic reduction in cognitive activity (including education) is usually indicated. However, this need for reduction in activity will typically persist for far longer than in other illnesses and it is the biggest cause of long term sickness absence from school [Dowsett and Colby, 1997]. Stage One is more apparent in severe cases.
Stage Two - Stabilisation
Any excess activity causes relapse to stage one. Extreme caution needed. Patients may remain in this stage for years and progress may be very slow.
Stage Three - Remission
Activities can be gradually increased with confidence.
He also cautioned: “Relapses may lead to reversion to an earlier stage. For children, close observation by the parent or carer will usually determine the stage. Listen carefully to the child!”
Put his clinical expertise with that of the great expert Dr Elizabeth Dowsett, couple it with her specialist microbiological knowledge, and the thing starts to make sense. Dr Dowsett explained in her interview with me:
Most microbes aim to co-exist with the human body. Both make concessions in order to live in harmony. So our bodies are full of microbes, absolutely full of them. Fungi, bacteria, viruses. A lot of these are extremely benign. They've made adjustments so that they don't harm you, and you have also made adjustments.
Yes, so that your immune system doesn't throw them out. […]
So one of the reasons why people slowly get stronger in ME is that they are learning to live with the virus and the virus is learning to live with them.
Yes. Both sides make adjustments.
Historically, it has been hard for researchers to find the persisting viral particles in the tissues of patients, but Dr John Chia's protocol can find them in the stomach lining. They persist over many years. It is not surprising to me that Hornig and Lipkin say the immune system response changes over time. It is surely likely that it is merely reflecting the process by which the body is learning to live with the virus and vice versa.
Dr Dowsett explains some of this in There's No Smoke Without Fire. She talks of the immune system being “primarily programmed only to attack cells or tissues producing a danger signal” and gives examples of aggressive viruses which do that. She goes on:
“At the other end of the microbial scale we have diseases caused by a wide variety of virus species which (through millennia of association with humans) have learnt by various means to persist inside human cells for long periods without alarming the host’s immunological surveillance system. Of such are the viruses associated with ME.”
Let us assume that Hornig and Lipkin's results are accurate. Good stuff. But we do not also need to accept their suggestion that the immune system may be dysfunctional. Dr Dowsett was adamant that it wasn't. Their research finds that after the first three years or so of illness, during which the immune system is in 'overdrive', it dampens down. They speculate that this might be because the system becomes 'stuck' in an overactive mode (having reacted initially to a virus that has long gone) and that after three years of this, the system has somehow got itself exhausted. Then we see the activity much reduced. How complicated is that? If we are proposing that explanation, it would depend on lots of people's immune systems behaving in the same way, getting worn out at the same approximate time. Everyone is different, as we know. What is special about three years, in terms of each person's immune function?
It makes far more sense to me that we are seeing evidence in their research of exactly what Dr Franklin observed and Dr Dowsett explained: the virus has settled in for the long haul, according to its normal behaviour pattern. It has stopped provoking the immune system to keep itself on high alert, and the immune system has gratefully gone back to its normal job of 'housekeeping', as Dr Dowsett called it. Symbiosis.
Well, well, time will tell. I always used to tell my virus (Coxsackie B): “Look, I don't mind giving you house room, if you'll just please not give me too much trouble.”
This blogpost may well get absorbed into my book ME – The New Plague 2. Depending on what happens in the meantime!