Fighting on to spread the cure

Share this article

DAVID Mason Brown was the only boy at school allowed to make himself cups of tea with six heaped spoonfuls of sugar. The school doctor even let him carry a jar of sugar around with him to treat his "brain fog", moments when his concentration and energy would suddenly plummet.

More than 40 years later, Mason Brown now knows he was trying to ease a condition which still isn’t properly recognised, let alone treated, by the NHS. He suffers from myalgic encephalomyelitis, better known as ME, and chronic fatigue syndrome. And now he’s a self-styled ME specialist, because, he says, he’s had to be.

His condition began to cause problems for him when he collapsed while working as a junior doctor in Edinburgh in the 1960s. He struggled on to qualify as a GP, and spent ten years in full-time practice in North Berwick when one day in the late summer of 1979, he just couldn’t get out of bed.

After spending six weeks barely able to move, the doctor says he finally realised he had to heal himself before he could care for anyone else. He finally retired as a GP due to ill health in 1990.

Ten years and 30,000 later, Dr Mason Brown believes he has found an answer to treat his ME. It’s a drug called nimodipine, currently used to treat victims of the same type of stroke recently suffered by Hollywood star Sharon Stone.

Nimodipine, with the tradename Nimotop, is not licensed for the treatment of ME. However, as doctors can prescribe "off label" for any condition if they take responsibility, Mason Brown has been privately prescribing it to more than 100 patients for seven years.

The honourary medical consultant to Edinburgh ME Self Help (MESH) claims he has made a 95 per cent recovery after taking the drug, which boosts brain circulation, along with herbal supplements such as gingko biloba. And he now hopes the NHS will consider using it to help thousands of ME sufferers.

The Government has only just recognised ME is a genuine disease, and the treatment on offer is limited and often ineffective. Indeed the only specialist rehabilitation clinic for ME and chronic fatigue syndrome in Edinburgh closed last year, due to lack of funding.

Now, though, Scotland’s deputy health minister Hugh Henry has pledged to set up an action group to decide how to improve the care of sufferers, and it is likely Lothian NHS Board will be asked to lead it.

Dr Mason Brown welcomes the recent developments, but says we are now almost a decade behind the United States in treating the disease, often dismissed as "yuppie flu" or misdiagnosed as depression.

"The missed opportunities of what has happened in British medicine with chronic fatigue syndrome and ME over the last ten years are very tragic," he says. "The people who have suffered are the patients and their families."

Dr Mason Brown believes the UK has languished behind Canada and the US in diagnosing ME because symptoms are mistaken for depression or other mental health problems. He says that in 1992, the Americans and Canadians finally determined a protocol for differentiating ME from depression, and Nimotop is just one of the drugs used by one of the leading experts in the US, Dr Jay Goldstein, of the Chronic Fatigue Institute in California.

By the mid-90s, the Americans were also aware ME patients had physical symptoms, including markedly different blood flow patterns in the brain.

Dr Mason Brown says: "In ME, parts of the brain don’t get enough circulation, so there isn’t enough oxygen or nutrients going in. Nimodipine increases blood flow in the brain."

However, Dr Mason Brown advocates a holistic approach in treating - and even preventing - ME and chronic fatigue. He says a combination of factors, including genetic make-up, exposure to viral infections - he believes his own was triggered by measles - pollution and toxicity from pesticides, poor diet and prolonged stress all combine to trigger the condition.

A spokeswoman for Bayer, which manufactures Nimotop, says she can only recommend it as a treatment for sub-arachnoid haemorrhage, a type of stroke.

She adds: "Doctors can prescribe whether it is licensed or not, but we can’t recommend doing so."

Nor does the Scottish Executive, which has at last conceded that ME can be "a debilitating condition, causing considerable pain or even disability".

Given the scepticism about ME and its treatment in the British medical profession, it may be some time before Dr Mason Brown’s suggestions are taken on board by the NHS, if at all.

Meanwhile, he firmly believes he has conquered his own illness, and helped others to do the same. "I am 61 now, and I am healthier than I have been since I was 35."

On the mend thanks to doctor’s drug

SIX weeks ago, Rosanne Kitchener was in despair that she would ever feel well again. After nine years of suffering from ME, she didn’t even have enough energy to walk to the shops.

Now the 40-year-old mum is full of life, and she attributes her remarkable recovery to taking Nimodipine prescribed by Dr David Mason Brown.

She claims she has gone from being 80 per cent disabled to just 30 per cent in less than two months.

"I have been ill for nine years now, and in the last two years I almost ended up in a wheelchair," she says. "I had been on a multitude of antibiotics, and I was just a toxic mess. Nobody had any answers and I just got worse and worse."

Then two years ago her health deteriorated further. "I couldn’t walk to work and didn’t even have the energy to dry my hair. It was total collapse. "

After failing to get a diagnosis for her condition, Rosanne, from Muirhouse in Edinburgh, went to her local library. "I found a book on ME and I thought, ‘this is what I have’. "

Rosanne went to the MESH support group, where one of the members told her about Dr Mason Brown. He prescribed her Nimodipine.

"Now my quality of life has shot through the ceiling," she enthuses. "I have increased vitality and I don’t walk with a stick or a tremor."