‘ME patients need government support’ – Sunday Times of Malta, 3 October 2010

Letter to the paper from Rebecca Sultana, Nicola K Reiss and Beatrice Gatt (ME Sufferers Malta).

ME patients need government support

Following recent research that links Myalgic Encephalomyelitis (ME) to a retrovirus called XMRV and the indefinite blood ban on people with a history of this chronic neurological disease, ME Sufferers Malta calls on the government to provide appropriate education and training of health care professionals.

Medical professionals need to know how to clinically assess and diagnose ME patients at an early stage, based on a consistent set of up-to-date diagnostic criteria, and advise them on appropriate forms of health management.

According to research funded by the ME Association UK last year, early diagnosis and sympathetic supportive management appear to be the determining factors affecting prognosis in ME, and whether or not the patient develops a severe form of the disease.

ME (also misleadingly called Chronic Fatigue Syndrome) leaves patients suffering from a number of disabling symptoms, ranging from mild to severe, depending on how affected s/he is. Although to date there is no accepted universal treatment for ME, some symptoms may be alleviated with the help of ME specialists’ advice and medical care.

ME sufferers all over the world are hopeful that XMRV research will provide effective treatment to cure ME, and even then specialised doctors would be crucial in providing local patients with the best quality patient care management. At present, patients waste their money on useless specialist appointments, medication and treatments that at best don’t work, and at worst bring on a relapse or worsen one’s health, sometimes irrevocably.

In the absence of such specialised assistance, as EU citizens ME patients should have access to free cross-border care. ME sufferers, most of whom are unable to work, are financially strapped with added expenses such as trial-and-error medications, special foods, special mattresses, sound-proofing and aids for disabled living, just to mention a very few. Without government assistance patients will never be able to get treatment abroad – treatment they have a right to, in the same way as those with other medical conditions for which no treatment exists in Malta.

ME Sufferers Malta would like to remind the Health Ministry that patients are still in the dark regarding the outcome of the social security review process – whether ME will be added to the list of disabilities covered by social security legislation that would assure sufferers the services and benefits that should be theirs by right.

This government must ensure that people with ME get all the help and support they so urgently need, if there is to be true social justice and no discrimination between one patient and another.

Malta’s Green Party calls for greater social inclusion for people with ME.

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