The AHA Factor and the THREE HOLY GRAILS
People with ME are not just ‘normally’ ill (to use a contradictory phrase!). They do not just have sore throats and swollen glands, but may feel – and be – more ill than they have ever felt in their lives.
Without personal experience, this is difficult to imagine, so ‘outsiders’, whether doctors, teachers, or family, often do not realise the seriousness of what they are dealing with. More and more studies show physical damage.
The use of the term ‘Chronic Fatigue Syndrome’ (CFS) is unsatisfactory because many cases diagnosed as CFS do not follow the course or symptom pattern of what we might call ‘true’ ME. For the moment, the Department of Health has reached an uneasy truce with the term CFS/ME.
Most cases of true ME are known to follow a viral infection, either a serious one or one which seemed at the time to be relatively mild. It may be that if every case of ME were diagnosed early enough, all would be seen to fall into this category. Often it is many months or even years before diagnosis. Whether or not the ME was originally triggered by a virus, especially if the infection appeared to be mild, is by then lost in the mists of time.
We have therefore seen conflicting theories about the causes of ME. It is often not possible to isolate the exact time at which the disease began, and to remember if there was an infection shortly beforehand. Some infections even take place subclinically - that is, they cause no immediate symptoms, though they may lead to complications later if a chronic effect is triggered.
Not everyone reacts to viruses in the same way, so what we call ‘host factors’ come into play, and here there is more scope for confusion. If you get an infection, you are playing ‘host’ to it. How will your body react? Many different things can affect someone's ‘host response’ – genetic susceptibility, great physical effort, shocks to the body – anything that affects the ability to produce a satisfactory immune response at the time. One of the many contributory factors to ME, or even one of the many effects, can become isolated from the whole picture. Researchers may say – ‘Aha.’ They think they have found the cause.
One subject that has caused a lot of ‘Aha’ is stress. Was the patient very stressed when ME took hold? ‘Aha, ME must be a stress-induced disease.’ ME became seen as psychological. This is now known to be an unsatisfactory explanation on its own. Disease is a complex process. Stress affects immune function and is just one of the many ‘host response’ factors that may affect our ability to fight infection.
A very demanding lifestyle, great stress at work, personal trauma or accident can all undermine immune response and can trigger a much worse reaction to what might otherwise be a trivial infection. Doing something physically demanding in the first week or two, such as sport, can affect how our body deals with a foreign invasion - which is what an infection is. A vaccination demands the attention of our immune system to deal with it and distracts the body from fighting other invasions that we are exposed to at the same time; schools are supposed to wait until an actively sick child recovers before immunising them.
We may not even possess the necessary antibodies to cope with a particular bug. ME often follows a foreign holiday, one of the known risk factors, especially where polluted beaches are concerned. Did we meet viruses we had never met before and against which we had built up no natural immunity? The list of possible links with infection goes on and on.
In the absence of a straight cure for ME, researchers have focused on psychological therapies, touted as cures by irresponsible practitioners and reported as such in the media. Like Invest in ME and The Young ME Sufferers Trust, I believe that enough is enough. It is time to focus attention on the physical nature of the illness, and particularly in my opinion, on the microbiology as well as the host factors and the effects. Early identification of infecting organisms, especially in children, who are the epicentre of this illness, is vital.
There are three Holy Grails:
- a biological marker for diagnosis
- remedial treatment for the effects
- preventative measures. This last could happen now, with early use of rapid PCR tests in GPs’ surgeries
To read more by Dr Elizabeth Dowsett and Jane Colby about their 5 year study of ME showing clusters in schools (the largest to date world-wide) go to www.youngactiononline.com/docs/doesme.htm
