I spent £20,000 trying to beat ME with quack cures. And all I really needed to do was slow down
By
Mark Anstead
Last updated at 8:31 PM on 15th December 2008
On first impression, former model Suzi Walker leads a charmed life. She lives in a luxury £2million home in Surrey with her daughter Sophie, aged ten; her boyfriend is Simon Jordan, 41-year-old millionaire chairman of Crystal Palace Football Club - and in January she gave birth to their daughter, Cameron.
But for the past ten years Suzi, 37, has been struggling with Chronic Fatigue Syndrome, also known as ME, a condition affecting 250,000 people in the UK and for which there is no cure.
Chronic fatigue: Suzi Walker began suffering from ME after giving birth
Suzi's symptoms first emerged after giving birth to Sophie a decade ago, and over the next seven years her life was marked by pain and fatigue. Frequently exhausted, she couldn't look after her daughter or accept any modelling assignments. The strain of dealing with the condition contributed to the breakdown of her marriage in 2006 to footballer Ian Walker.
Having tried every treatment available, from acupuncture to vitamin supplements, it has only been in the past three years that she has regained any semblance of a normal life, helped, she says, by her GP's advice to manage her energy and pace herself.
She still suffers frequent relapses - 'but I'm lucky because I have now made an almost complete recovery,' she says. 'There are many ME sufferers who don't get better, but a few years ago I noticed my condition was improving. My doctor recommended rest and only gentle exercise and I suppose that has worked.'
ME was first documented in the 1930s, but was considered controversial because of its wide variety of symptoms and lack of obvious cause. Symptoms can include exhaustion, sleep disturbances, sore throat, headaches, pain in the muscles and joints and concentration difficulties.
Some ME patients find their condition improves over time as did Dame Kelly Holmes who developed it in 2001, but went on to win double gold at the 2004 Olympics.
But in other cases it can be permanently debilitating, as with Lynn Gilderdale who died last week after being bedridden for 17 years, unable to talk or eat by herself.
Not all in your mind
For a long time ME was dismissed as psychological. However, as understanding about the body's immune system developed, it's now accepted there are physiological causes - it is thought to be triggered by bacterial or viral infection, depression and stress. Opinion is sharply divided over whether there is a psychological link.
ME was officially recognised as an illness in 2002. Although Suzi wasn't diagnosed until 2001, three years after its onset, she says she knew her condition wasn't in her mind.
'If you met me at any time in the seven years after it started you wouldn't have recognised me,' she says. 'I was exhausted, depressed and often couldn't even lift my arms.
'I used to try to get up each day, but if I managed to I would only have to lie down on the sofa again. Anything involving effort, such as shopping, my mum had to do it.'
Understanding: Suzi with her current partner, Simon Jordan, in early 2007
Suzi's problems began when she suffered convulsions during her labour with Sophie - her daughter by her then husband, Ian Walker - in 1998. She had eclampsia, a dangerous form of high blood pressure and spent five days in intensive care.
Back home, her energy levels hadn't improved after three weeks.
Her GP diagnosed glandular fever, which could have triggered the ME.
'It was as if my body never had time to recover,' says Suzi. 'My doctor said I had nearly died from the eclampsia and that must have lowered my defences so I caught a viral infection. My glands came up, I had a sore throat and I felt very unwell. That's still exactly how I feel whenever I have a relapse.
'I don't remember those early months - I was too exhausted to bond properly with Sophie.'
After a year, and no better, Suzi was diagnosed with post-natal depression - but she felt there was more to her problems than that.
Any act of concentration, such as reading, proved impossible for lack of energy. 'Ian used to say to me: "I feel tired as well, Suzi," and he was really unsympathetic,' she says. 'I told him it wasn't just tiredness - I could hardly lift a cup of tea.
'I lost all interest in food and lost more than a stone in weight. It didn't help that people didn't understand. There's a stigma attached to this condition and some of my friends wondered why I couldn't just pull myself together.
'It really annoyed me that people thought I was doing it for attention.'
ME is not easy to diagnose, says Dr William Weir, a specialist in infectious diseases (he now sees 12 new patients with ME a month at his clinic).
'Symptoms vary widely in nature and severity and I always need to investigate thoroughly to make sure other potential causes aren't lurking in the background, such as Lyme Disease or hepatitis.
'The exact causes of ME are not known, but scientific evidence suggests a dysfunctional immune system. Some of the patients I see are so ill they can barely walk.
'Good days' and 'good weeks'
Three years after the onset of her symptoms Suzi was referred to a specialist at King's College Hospital in London who reviewed her case and diagnosed her with ME.
He recommended rest combined with some gentle planned activity, such as short walks, but he didn't promise a cure.
Desperate, Suzi began looking for alternative solutions. She spent £20,000 on a six-week course of treatment at a private complementary medicine centre.
'I was so desperate for a cure I splashed my money around on treatments that were useless,' says Suzi. 'Sometimes I was convinced I felt better, but that was just the placebo effect because weeks later my symptoms still hadn't improved.
Pins and needles: Suzi tried acupuncture to alleviate her symptoms (posed by model)
At one point she spoke about her condition on GMTV. 'People wrote to me suggesting crystals, magnesium, cod liver oil and magnetic beds,' she says.
'I tried them all. Also colour therapy, reflexology, acupuncture and cutting wheat from my diet. I even went to a psychic healer, but none of it made any difference.'
However, by the time Sophie was five Suzi began to find her 'good days' extending to 'good weeks', or even months punctuated by periods of feeling unwell. She drew a crucial connection with her lifestyle and her condition flaring up.
'I realised I had to be careful - if I had anything wrong with me, even a cold, I had to go to and rest.
'I have learned to use breathing techniques every day to try to stay relaxed, but for the rest of my life I will probably have to pace myself.'
Dr Weir prescribes rest with low-key activity, depending on what the patient can manage. Some also benefit from Omega 3 and Vitamin D supplements.
'Sadly, there is still a lot of ignorance about this condition. Some patients are told to exercise because their GP thinks the problem is in their mind, but in my experience that only makes things worse. If a patient has been ill less than a year and is trying to shake it off, rest really can help.'
Under NICE (National Institute for Health and Clinical Excellence) guidelines, doctors are advised that the best way to manage ME is through exercise and cognitive behavioural therapy (CBT) - helping change patients' attitudes towards how they feel.
However, this is highly controversial as it suggests the condition is psychological, and many ME sufferers and some experts are furious that NICE has ignored evidence that ME is physiological.
While Suzi has no doubt her illness is a physical one, the NICE approach seems to have helped her. But too late, it seems, for her marriage.
Suzi admits her condition put a strain on her marriage and contributed to her very public split with Ian two years ago when he confessed to having an affair. Her divorce will be finalised next month.
Last year, however, Suzi began a relationship with Simon Jordan who, she says, is very understanding and encourages her to rest and take the necessary time out to recover.
'Looking back, if there's anything I regret at all it's the impact my condition has had on my relationship with Sophie,' she says. Tears well up in her eyes as she recalls the ways she has missed much of her elder daughter's development.
Suzi adds: 'I want everyone to know that having ME can really destroy your life. There needs to be more money poured into research because we still don't understand this condition and it's ridiculous there is still a stigma attached to it. We need to find a cure.'
- SUZI WALKER is patron of the Fibromyalgia Awareness organisation Polkadotgals.com, which aims to raise awareness for a condition similar to ME.