ME sufferers ‘appalled’ by proposed therapies | The Sunday Times of Malta | 6 May 2012

From The Sunday Times of Malta, 6 May 2012 (story by Ariadne Massa).

Sufferers of the debilitating illness ME are “appalled” and “horrified” by the health authorities’ decision to consider offering treatment they believe will only make their condition worse.

They feel the Health Ministry’s course of action flies in the face of scientific biomedical evidence that ME – myalgic encephalomyelitis – is a physical, neurological illness as defined by the World Health Organisation in 1969.

Last week the ministry told The Sunday Times it was assessing the possibility of training local professionals to delivercognitive behavioural therapy (CBT) and graded exercise therapy (GET), which focus on treating the illness as a psychological/psychosocial condition.

This sparked outrage among patients who said such statements reflected the lack of proper awareness in the health sector and further accentuated the myth that ME was “all in the head”.

“The most shocking and worrying fact is the ministry has chosen to ignore the substantial body of evidence on this organic neurological disease,” Rebecca Sultana, ME Sufferers Malta founder, said, adding she was too ill to continue fighting her cause.

ME is characterised by a range of neurological symptoms, muscle pain and intense physical or mental exhaustion. Its cause is still unknown, there is no known cure, and as there is no exact definition of ME diagnosing, it makes it doubly hard.

As the world today marks the start of ME Awareness Week, Ms Sultana and two other sufferers – Nicola Reiss and actor Kevin Drake – have come forward to voicetheir concerns.

Their fears are supported by research psychologist John Greensmith who set up the ME Community Trust in the UK and hasbeen closely following the developments in Malta.

“The anecdotal hard-knock experience of patients and research evidence to date shows CBT is ineffective and GET makes the majority worse,” Dr Greensmith, who was diagnosed with ME 24 years ago, told The Sunday Times.

When faced with sufferers’ reservations about the proposed treatment, a ministry spokesman insisted its decisions were based on guidance issued by the UK’s National Institute for Health and Clinical Excellence.

“The ministry already provides services through medical specialists and is considering exploring further therapy,” the spokesman said. He insisted the ministry was willing to reconsider CBT and GET in place of other more effective treatments and assured it was prepared to discuss with ME sufferers about the way forward in terms of therapy.

Dr Greensmith acknowledged that all that was on offer on the UK’s NHS were CBT and GET so it was not surprising that GPs were inclined to refer patients for such therapy.

However, those who tried such therapies failed to improve and research by Twisk and Maes in 2009 established that cognitive behaviour therapy was “ineffective” while graded exercise therapy made the majority “worse”, with sufferers sometimes never recovering to where they started.

So, what is the best treatment?

“The truth is there isn’t an effective one. I hold the view that it is better to have no treatment at all – apart from primary care treatment from your GP for symptom relief, such as medication for sleep, or pain – than one which is ineffective, raises false hopes or makes you worse,” he said.

However, symptoms can be alleviated. Ms Reiss, who was diagnosed with ME in October 2008 when she was living in Malta, wrote in saying she was fortunate enough to find a specialist doctor when she moved to Melbourne who carried out extensive tests and treated underlying conditions.

“I have gone from being largely housebound and unable to work to working 25 hours a week… every ME patient in Malta should have the same access to a trained and knowledgeable doctor,” she said.

Mr Drake went a step further and issued a sincere plea to the authorities: “Please help us restore some of our dignity. That is all. That is everything.”

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.