‘It’s a real illness and a physical one’ | famous harpist talks to The Times | 3 March 2015

March 3, 2015

From ‘The Times', 3 March 201%. Story by Liz Hoggard.

Before her world came crashing down, Claire Jones was official harpist to the Prince of Wales. She performed in front of royalty — playing privately for Prince William before a Wales v South Africa rugby match at the Millennium Stadium, Cardiff — and Hollywood stars such as Nicole Kidman. For Prince Charles’s 60th birthday she arranged a surprise choir of 60 harps.

“I spent days phoning people and planning it,” recalls the bubbly, blonde 30-year-old, then a self-confessed “perfectionist”. At the royal wedding reception for the Duke and Duchess of Cambridge, she played Charles’s priceless gold leaf Salvi harp at Buckingham Palace. “Prince Harry had a chat and at the end Kate and William thanked me for playing,” she says. “It was like any family wedding . . . almost!” The duchess sent Jones personal pictures after the wedding.

A year later it was Jones’s turn to walk down the aisle at her wedding to the composer Chris Marshall. She wore a dress by David Emanuel, who made Princess Diana’s wedding dress. “Our first wedding gift to arrive was from Prince Charles and the Duchess of Cornwall and they also sent us a lovely letter wishing us all the best,” Jones says. Then, just when she thought life couldn’t get much better, it took a dramatic turn for the worse.

Shortly after her wedding she began to feel exhausted. “I was getting bad migraines where I couldn’t see and sharp burning pains all over my body,” Jones says. In retrospect she had pushed herself too hard for too long. Her motivation had driven her to learn three instruments from the age of seven (“up at 6am practising for two hours before school”), pushed her into 180 royal engagements (“you’re giving out so much energy, you’re constantly living on an adrenalin high”) and into more than 1,000 TV and radio interviews promoting The Girl With the Golden Harp, the album she released after the royal wedding.

Like the wedding dress designer Sarah Burton and the royal cake-maker Fiona Cairns, she became a media star. “I’d be on a plane to Hong Kong one day, do a concert then fly back the next. I wasn’t giving myself enough time to recover, but I was young and thought I could sustain it. I treated my body like a machine.”

In May 2013, though, Marshall had to take Jones into A&E. She had been living on over-the-counter painkillers but had reached the point where “every single thing was screaming in my body. I ignored the symptoms and thought, ‘Just get on with it’, because that’s the society we live in. And in a very genuine way, with my personality, I love to aim for things and achieve.” Yet while waiting for tests in the hospital she had a seizure “and, bang, all of a sudden things changed. There were doctors all around.”

Her consultant had been through a similar episode and recognised the symptoms. He diagnosed myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome (CFS), a debilitating illness that affects an estimated 250,000 sufferers in the UK, usually develops between the early twenties and mid-forties and is more common in women than men. It is also often dismissed as yuppie flu by sceptics, of which there are many.

“There is a stigma attached to ME,” agrees Jones. “Some people think it’s possibly in the mind, but it’s really not — it’s all physical. Anyone who knows me knows I’m not a lazy person at all. It’s a real illness and a physical one.”

Those like Jones who hold such a conviction received scientific backing last week when researchers at the Center for Infection and Immunity at Columbia University announced the discovery of robust evidence that ME is a biological illness with distinct stages, as opposed to a psychological disorder. By measuring immune biomarkers in blood plasma samples, scientists found specific patterns in patients who had the disease for three years or less.

This supports the idea that ME may reflect an infectious “hit-and-run” event in which patients become sick from a common infection or virus that throws a wrench into the immune system’s ability to quiet itself after the acute infection (so it becomes like a car stuck in high gear).

This resonates for Jones. “It confirms what every ME/CFS sufferer already knows, that their symptoms are real. The research describes much of my own experience with ME, tracing it back to a viral illness, in my case having shingles at 16, and the gradual increase in symptoms over the years. I hope this will change many people’s perceptions about ME/CFS and that we’ll see understanding about the condition grow among medical professionals and give those who suffer from it a chance of early diagnosis and a hope of recovery.”

Part of the frustration of living with ME is that because sufferers display such different symptoms the NHS offers medication to help, but no “cure”. Jones was sent home from hospital with really strong prescription painkillers. The side-effects made her dizzy and gave her visions.

At the time Marshall was working long hours on a West End musical, so Jones went to stay with her parents in Wales because she was unable to care for herself. It’s hard to believe looking at her now that two years ago she was utterly bed-bound. She could barely lift her arms or move her legs. “I was so weak my mum had to bathe me.”

Marshall visited at weekends but their life was on hold. Concerts were cancelled. She spent whole days asleep. Anxiety flooded in. “And that’s not me at all. I’m very confident. I became a frightened person. And that’s a scary place to be when you’re 28.”

Then her mother came across the Optimum Health Clinic Foundation, a private London clinic that specialises in treating ME. For the next 18 months she became an outpatient as “they patiently worked with me on a programme of treatment to undo the damage I’d done to myself over years of overworking and generally not taking very good care of myself”.

Jones took up yoga and meditation, and cut out wheat and dairy: “It was about getting my body down from a really distressed state to a healing state.” She also found a chiropractor in Cardiff who worked on realigning her bones (after years of playing the harp), releasing blockages in the nervous system.

Another great help was a specialist in natural medicine in Dorset. “He ran electrical current tests to determine which organs were struggling and which viruses were present, then made up herbal remedies to stimulate my body to work properly.” He even identified a parasite she’d picked up from drinking contaminated water on tour in Russia.

Her collapse had come as a shock but, she says: “I couldn’t accept a prognosis of ‘you have ME you just have to live with it’. I just couldn’t imagine living the rest of my life never performing again.” Slowly, and still in pain, she began practising the harp for five minutes a day. “Anything to keep my fingers moving. I’m quite a determined character.”

After five months she managed to start doing concerts. Last autumn she was declared to be fully recovered and has just released a new album Journey: Harp to Soothe the Soul.

Jones believes she was lucky; she lost only two years of her life. Private treatment, she says, can cost tens of thousands of pounds for long-term sufferers. “Optimum Health Foundation did a survey last year and had 5,000 enquiries, but 92 per cent of people couldn’t afford the treatment.”

So she has teamed up with the clinic, a registered charity and the leading investor in research into ME/CFS in the UK, to spearhead a campaign to fund a full-scale medical trial of their methods in partnership with the University of Surrey. The aim is to encourage the NHS to offer the treatment for nothing.

All proceeds from a fundraising gala at which she is performing on Thursday will go to the campaign. Jones knew it was a risk to make her illness public just as she was returning to the spotlight, but is convinced “it’s been the best thing. People don’t talk about it enough.”

She credits Marshall with giving her the confidence to be open. “I was so lucky I have a husband I can tell everything and share the tools the clinic have given me to be in the world again.” The couple collaborated on her new album, which documents her recovery.

Their work/life balance, though, is completely different now. Mobile phones are switched off after 9pm. Her schedule is carefully planned. She has learnt to soften her perfectionist patterns. “It was all about rewiring the way I think. I’ve learnt I’m not superhuman,” she laughs.

Claire Jones will perform at a gala fundraising concert at St John’s, Smith Square, London SW1, on March 5, followed by a national tour

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