From Ms R. Sultana
The most likely reason why very severe ME sufferers die is due to inflammation in the brain and spinal cord, which has been confirmed in a number of post-mortem cases around the world. However, a new phenomenon is becoming more common.
The second death of an ME sufferer has featured in the UK news in the last three months. Last September, psychologist Nicola McNougher travelled to Switzerland to take her own life, using the country’s legal “assisted suicide” system, after suffering horrendous years of torment, pain and misunderstanding. She called ME “a nuclear bomb to the brain and body”.
Two weeks ago, a mother was arrested on suspicion of mercy killing her very severely ill and totally bed-ridden daughter Lynn Gilderdale (whom she had lovingly nursed for 17 years) – http://www.dailymail.co.uk/news/article-1092865/Devoted-mother-arrested-mercy-killing-yuppie-flu-daughter-died-massive-morphine-overdose.html. The mother had been campaigning tirelessly for ME awareness and support, but was constantly let down by “the system” and the medical profession (http://news.bbc.co.uk/2/hi/health/1234297.stm). She once said: “Lynn is neither one nor the other. She is stuck in that room, not dead, but not alive properly.”
In both cases, neither of which is unique, the sufferers were met with hostility and scepticism. Sadly, doctors often blame the patient, labelling them as malingerers or attention seekers who suffer from “yuppie flu” and giving them bad advice, instead of admitting their lack of knowledge about ME. Sufferers experience this abuse while silently battling what Dr Mark Loveless (head of the AIDS and CFS clinic at Oregon Health Sciences University) at a 1995 congressional briefing described as “effectively the same every day as an AIDS patient feels two weeks before death”.
People suffering from ME can understand that many find ME a very complex and confusing illness. It is so for the affected, let alone for those who do not experience the life-destroying disease. ME sufferers know that, like other things unexplainable, it’s easier to pretend the illness doesn’t exist and shun it. However, sufferers can never accept that ME is put under the umbrella term “Chronic Fatigue Syndrome” and treated as a form of depressive condition that could be fixed by counselling (Cognitive Behavioural Therapy) and exercise (Graded Exercise Therapy).
How many Nicolas and Lynns have to die before ME sufferers and their illness are taken seriously?
Sufferers in the UK describe the present situation for ME patients as a national scandal, but what can we say about the situation in Malta where the number of people (not sufferers or family) who are aware of this debilitating illness could be counted on fewer than the fingers on one hand?
There is an urgent need for a better understanding and recognition of ME as a physical and neurological illness (WHO-ICD-10-G93.3), so that the medical profession will treat sufferers accordingly and not neglect them and, more importantly, so that there will be more funding for serious biomedical research on ME and therefore more hope of finding a definite and permanent cure.
Rebecca Sultana
ME Sufferers Malta