JK Rowling quits MS charity because of its controversial changes

From The Independent in the UK:

J K Rowling (pictured0 has resigned as patron of a charity that combats multiple sclerosis, the wasting disease which killed her mother. Her departure from Multiple Sclerosis Society Scotland (MSSS) follows months of bitter internal wrangling within the charity, which is undergoing a re-organisation ordered by its London head office.

The multimillionaire writer has complained that reforms have changed the charity "beyond recognition", driving out people she values and leaving others demoralised.

Her departure is the worst publicity the MS Society received. As well as being the world's most famous living children's author, Rowling has been a generous donor and campaigner on behalf of those who suffer from the illness. Her resignation was reported by agencies around the world April 9.

In a statement, the author said that she had left "with profound regret and sadness". She said her disappointment at the turn of events could not be overstated. "I have reluctantly decided that I cannot, in good conscience, continue to be the public face of a charity that is changing beyond recognition from the one with which I have been so proud to be associated. I have not taken the decision to quit my position as patron of MSSS lightly. Late last year, I initiated and attended a mediation session, in the hope of sorting out long-standing and escalating conflict between the Scottish council and
management in London, driven by the imposition of changes by London.

"Unfortunately, this achieved very little. With mounting frustration and disappointment, I have witnessed resignations of immensely dedicated people within MSSS and the increasing demoralisation of staff whom I have come to know and admire over the 10 years of our association."

Scotland has the highest prevalence of MS in the world, with more than 10,500 people known to be suffering from the disease. Three quarters of its victims are women. JK Rowling's mother, Anne, was a fit 34-year-old when she began suffering from pins and needles in one arm, which a doctor originally attributed to a shortage of protein in the spinal fluid.

A year later, when symptoms had worsened, she saw a consultant, who diagnosed MS. "At first, life went on much as usual, perhaps too much as usual. My mother made few, if any, concessions to her illness," Rowling wrote in an article published eight years ago.

"Her deterioration was slow at first. There were bad spells when her walking became jerky and her general co-ordination suffered, then she would seem to recover for a while. After a few years, what had once been a bad spell became the norm, and the bad spells grew steadily worse. She was just past 40 when she started using a wheelchair outside the house and 42 when she needed a walking frame inside it.

"I saw her for the last time just before Christmas 1990. She was extremely thin and looked exhausted. I don't know how I didn't realise how ill she was. She died on New Year's Eve. When the telephone rang at half past seven in the morning and my boyfriend's mother called up the stairs, 'It's your Dad', I knew. Fathers don't call their daughters that early except for the worst of reasons. She was 45 and I still can't write about her without crying."

Rowling took part in a campaign in 2003 for a national standard of care for MS sufferers. The Multiple Sclerosis Research Centre at Edinburgh University owes its existence, initially, to a substantial donation which Rowling made in 2006. She will carry on supporting the centre. She has also intervened in public policy disputes over the treatment of MS patients and protested in 2007 when the Scottish Medicines Consortium advised against prescribing the drug Tysabri because of the expense.

She said at the time: "If a drug can help tackle MS, particularly the very aggressive type of relapsing MS we are talking about, it should not be ruled out because of cost alone."

A spokesman for the MS Society said yesterday: "JK Rowling has been a great patron for the MS Society Scotland for many years. We are sorry she is stepping down.

"The society is in the middle of a governance review to make sure we are properly organised to build on the excellent work we already do in Scotland and across the UK. We are a strong, democratic organisation and this review is being done in consultation with all of our 43,000 members.

"We would have preferred to do this with JK Rowling's involvement, but we appreciate that significant change can be difficult."

Scotland's gloomy weather is the prime suspect for the cause of its high rate of multiple sclerosis, writes Jeremy Laurance.

Grey skies and short days from October to March mean many Scots are short of vitamin D, made by the action of sunshine on the skin. Deficiency in vitamin D is twice as common among the Scots as it is among the English – and rates of MS are highest in Orkney and Shetland which are furthest north. Studies have also shown fewer people with MS are born in November and more in May, implicating a lack of sunshine in pregnancy as a cause.

The disease is uncommon in countries close to the equator and becomes increasingly common at distant latitudes. In the US rates are lowest in Florida and rise towards Canada.

As with all diseases, the cause of MS is an interaction between genes and the environment. The high rate in Scotland suggests a strong genetic predisposition in the population. Scientists believe there are between 50 and 100 genes that may be associated with MS, of which no more than a handful have been identified.

But the role of the environment in early life is important, too. Research shows that people who move from a country with a low incidence of the disease to one with a high incidence before the age of 14, acquire the risk of their destination country. But those who move after 14 retain the risk of their country of origin.

Experts have urged the Scots to launch a trial of vitamin D supplements to determine whether they could reduce the incidence of MS.