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| M.E. - Myalgic Encephalomyelitis In summer 2004, Irena was diagnosed as having Post Viral Fatigue Syndrome, also known as M.E. or Chronic Fatigue Syndrome. |
| The condition is often triggered by a viral infection or major surgery and in Irena's case, by three weeks of illness where she was unable to eat properly or get out of bed. This was followed by persistent viral infections, sore throats and illnesses where she tried to continue to live life normally, but every two or three weeks being taken ill and forced into several days of bed rest. The local GP's put this down to her being unlucky in catching several viral infections in succession. Following 6 to 9 months of continuous fatigue, we decided to take a BUPA private health assessment. The BUPA doctor concluded that ME was a likely cause for the continuous illness and recommended that Irena saw a specialist at the National Neurological Hospital in London. |
| For more information about ME, please refer to the following web sites : |
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| ME, myself and Irena |
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| Just as ME is not easy to diagnose, it is not easy to treat. Our own doctor's surgery provided little help in diagnosing the underlying condition, until we had it diagnosed via BUPA and the specialist. This caused unnecessary emotional stress from simply not knowing what was wrong. Even now, little support or recognition has been provided by the NHS. ME cannot be treated with a magic pill or medicine (certainly not consistently) and those that work for some sufferers do not work in every case. It has been suggested that taking high daily doses of Coenzyme Q10 could be helpful although this is only effective in about a third of cases. Self regulation seems to be the most important method of managing the condition. Where as most people can tire themselves out during the day and after a good night's sleep, be perfectly healthy the next day, ME sufferers find that getting tired can cause several days of fatigue and being unable to summon enough energy to even get out of bed, never mind walk. This fatigue state does not necessarily follow just one day of over exertion, but can be triggered by a few days of doing what would be a normal day for most people. Irena is having to learn to manage her energy levels to ensure that she only does about half of what she would have previously been able to do. To add to the confusion in managing the condition, the fatigue that follows over exertion can occur 36 hours after the event. |
| Dr M Hannah performed several tests, including an MRI scan, muscle biopsy and EMG tests to confirm that the condition was not one of several conditions which have similar symptoms. ME cannot be diagnosed by any one or series of tests, but by eliminating other conditions. The muscle biopsy showed an inconsistency in the shape and size of the muscle fibres (normal, healthy muscle fibres are of a consistent shape and size), one of the indicators for ME. |
| How is ME treated? |
| As we stand today, in late summer 2004, we are learning how to cope with the illness. Several books (and the web sites shown at the top of this page) provided good advice, as did Dr Hannah. Each day has to be taken as it comes and we can only hope that Irena has been through the chronic stage of the condition. It is likely that the current phase, which we hope is the recovery phase, will continue for several months or even years. Even when Irena has recovered to something like normal levels of energy, it is possible that a relapse could be triggered at any time. 'Normal', however is relative and sufferers often find they never fully return to previous energy levels. Take each day as it comes. |
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| This was following a year of classic symptoms, which were unfortunately not diagnosed by our local GP. |
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