From Ms R. Sultana

I was very shocked to read part of an otherwise interesting article “Worn Out” that appeared in the September issue of the Alive and Healthy magazine, issued with The Malta Independent on Sunday.

I and other fellow ME sufferers are very upset and nettled by the content under the sub-title “Chronic Fatigue Syndrome”, which is terribly misleading and damaging to people who were diagnosed with the debilitating condition.

CFS is notoriously and erroneously still used instead of or interchangeably with Myalgic Encephalomyelitis, no matter how long and hard international ME organisations and associations and patient representatives have relentlessly fought and continue to fight for the fairer and proper name ME.

Patients the world over detest the term CFS because it doesn’t do justice to all the symptoms (some of which are very disabling) they experience. Besides, fatigue is not the main or worst symptom.

Although ME has been recognised and is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3) since 1969, and although there is enough scientific research to prove this, there are still a few people who stubbornly think or believe that the condition is a form of psychological ailment or a variant of depression. This was assumed by the old school of medicine and diagnosis, but recent studies and ME research have proved this theory wrong.

ME is nowadays believed to be triggered most probably by a viral infection, but it’s still very early days and as yet no definitive treatment or cure exists.

Sophia Mirza and many more (listed on http://www.ncf-net.org/memorial.htm) have died of secondary illnesses attributed to ME. Moreover, quite a few on this lengthy list did not get the medical care they needed because their condition was not considered a physical one and they were treated as mental patients.

How many more have to die before such rubbish is eradicated once and for all?

Prescribing “exercise” and emphasising it must “be done regularly” could have disastrous effects on an ME sufferer’s health. There is evidence that moderate to severe sufferers have ended up bedridden or wheelchair bound following exercise regimes. In some cases, it has also proved fatal.

Physical activity is a positive and active strategy to help manage depression, but not ME. Some researchers have even suggested “exercise” as a diagnostic test for ME, for the simple reason that while people suffering from depression feel better afterwards, those with ME experience a worsening of symptoms and also relapses, depending on the intensity of the strain.

Telling sufferers to “confront emotional problems” is blatant nonsense. Depression can be a symptom of the condition, but it is secondary and arises as a result of being chronically ill for a long period of time. However, the real and majority of ME sufferers’ emotional problems are caused by people’s ignorance and inability to empathise, and by those who fail to take the responsibility of learning about conditions properly before putting pen to paper.

Regrettably, such misconstrued material (which I am sure appeared due to ignorance not insensitivity) perpetuates the lack of accurate and up-to-date knowledge about ME in Malta and, as a result, leads to further misunderstanding and disbelief about the true seriousness of the condition. And while the sufferer retreats further into isolation, any hope for biomedical research into the causes, consequences and treatment of ME vanishes over the horizon.

Coming across such incorrect information in a reputed health magazine that has a wide readership is not only very distressing but also potentially very dangerous.

Rebecca Sultana

MSIDA