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Why ME?

MagazineSeptember 2014 (Vol. 25 Issue 6)Why ME?

When scientist Kate O'Riordan developed chronic fatigue, she had to embrace everything alternative before she found a cure for her 'incurable' problemIf you go to your doctor and complain that you're feeling tired all the time, a few things might happen

When scientist Kate O'Riordan developed chronic fatigue, she had to embrace everything alternative before she found a cure for her 'incurable' problem
If you go to your doctor and complain that you're feeling tired all the time, a few things might happen. If he's open to the idea, he might diagnose your tiredness as chronic fatigue, and if he's of a more scientific bent, he might even classify it as ME, or myalgic encephalomyelitis. Then, depending on his disposition, he may regard the whole thing as being 'in your head' and prescribe antidepressants or one of the talking therapies. What he will most definitely confirm is that there's no cure and you'll just have to learn to live with the problem.
That was pretty much what Kate O'Riordan was told when, at the age of just 20, she was hit with fatigue during her third year of university, studying chemistry. Her fatigue was at the far end of the spectrum, and it was all she could do to drag herself onto the sofa at her parents' home during the day and back up to her bed
at night.
When it struck, she was on work placement at a laboratory. "I had trudged through the snow to work, and I just collapsed on the floor when I got there," she recalls. Kate was driven to her student quarters, and her father brought her back to the family home in Crawley, West Sussex.
She isn't sure what caused the chronic fatigue. She admits her diet was appalling-it was the standard student one of microwaved ready meals, pop tarts, pizzas and chocolate bars. She also caught glandular fever, and a virus is one of the recognized causes of chronic fatigue.
But for a long time as she lay on her parents' couch, she had no idea what had happened to her. "My parents didn't have a clue what was going on with me, and I was just too dizzy to even think, let alone concentrate," says Kate, now aged 26.
Her parents took her to the family doctor, who carried out a series of tests. They all came back negative, save one indicating she may have coeliac disease (an autoimmune disease caused by intolerance to gluten), although this was dismissed after an endoscopy failed to see any problems. A neurologist who ordered an MRI (magnetic resonance imaging) scan also couldn't find anything wrong with her, but diagnosed chronic fatigue. He suggested she take antidepressants, "but I wasn't feeling depressed," she said. He also recommended she attend a cognitive behavioural therapy (CBT) course, but she left after one session. All of this suggested the doctor thought Kate's problems were in her head.

Taking control
Not knowing what to do next, she decided to do her own research on the web. "I just couldn't accept that my condition was incurable. I started searching out alternatives that might work. Up to that point, I had no interest in alternative medicine. I had been trained as a scientist, although I think I had an open mind."
She realized that her poor diet must have contributed to the problem, so it made sense that a healthier one might reverse some of the symptoms, at least. She started to eat fresh fish, steamed vegetables and rice and, within a few weeks, found she was getting some of her energy back.
Kate also accepted her condition. "This helped reduce my stress levels because I came to accept that I wasn't going to rush back to work or university and that I had to focus completely on getting well."
One ME help site suggested acupuncture might improve things, and so she visited a practitioner near her home. Although this gave her temporary relief, the acupuncturist referred her to a naturopath because he diagnosed that the problem was somehow connected
to her gut.
The naturopath used a bioresonance machine, which diagnosed glandular fever-something the medical tests had failed to detect-Candida albicans fungus overgrowth in her gut, and food intolerances to wheat (gluten), beef and sugar. She's sure the Candida came on as a result of taking powerful tetracycline antibiotics to treat her acne.
"I had to cut out everything!" Kate said. "I became a complete label detective and read about everything and the ingredients before I would eat it. Everything seemed to have sugar or wheat in it." The hard work quickly paid off, although she suffered from shakes for days after she eliminated sugar from her diet. She had more energy, she started putting weight back on, and she started to look a lot better.
"I was still housebound but I could get up and about a little. I was able to do short walks around the block, but my legs were very weak because I hadn't used them for so long. My 'brain fog' also started to clear."
She started cooking and came up with her own wheat-free breads, and took oregano supplements to kill the Candida overgrowth and antiviral herb supplements. But she had too much of a good thing, and she developed an intolerance to the maize in the gluten-free food and suffered a bout of IBS (irritable bowel syndrome).
So she varied her diet again, removing the gluten-free options she was eating every day, and ate more natural and less processed foods. From there, she took up a vegetarian diet, then abandoned that to eat only raw vegan foods and juices. Today she eats a mixed diet of cooked and raw vegan.
Kate has completely overcome her chronic fatigue/ME, although she still suffers from occasional health challenges such as dermatitis, and she recently discovered she also had an enzyme deficiency.
But the illness, and her journey of discovery, transformed Kate from the hard-nosed scientist to someone who believes deeply in spirituality. "When I was at university, I was doing the work that other people wanted me to do. I was always pleasing others." Now she is pleasing herself. She writes about her experiences with ME on her website (www.katesinspiredcooking.com), she is working as an administrator for a cleaning agency, and she has taken up a part-time course on nutrition at the College of Naturopathic Medicine's Brighton campus.
Best of all, she's now helping other people overcome their ME. She believes it's her life's purpose to do so.
She's finally doing what she really wants to do and she's proved the doctors wrong: chronic fatigue/ME can be cured.

Kate's 10 tips for coping with ME
1 Accept
Make peace with your current limitations; it may require you to leave your job and to get others to help care for you.
2 Look externally
Get help and support from others, and see a doctor or therapist.
3 Fix your diet
Eat well, with plenty of fruits and vegetables, and take supplements if necessary.
4 Look within
Connect with yourself; meditate and try to understand the lessons the illness has for you.
5 Examine the past
Look for unresolved traumas or behavioural patterns that aren't serving you well.
6 Grieve
Spend time grieving over the past and any hurts, and then let them go.
7 Get back into the world
If you can, get out and meet people, or do some volunteer work.
8 Make changes
Introduce new behaviours; think positively and be grateful.
9 Look to the future
Set goals for where you want to be in 10 years' time; find your passion and take small steps to get you there.
10 Keep learning
Read about health and make small changes to your daily regime.

From junk to houmous
Kate's diet had a big part to play in her developing ME-and recovering from it. From the typical student diet of junk and processed food, she progressed to gluten-free, then to vegetarian and raw vegan. Today she eats a more balanced vegetarian diet that includes some cooked food. Here are the six stages of Kate's food odyssey.

Phase one:
The student diet
Microwaved ready-meal lasagne
Microwaved ready-meal salmon
Microwaved chips and fish fingers
Pop tarts
Cereals
Pizza

Phase two:
The gluten-free diet
Trout with wild rice, steamed broccoli and carrots
Gluten-free pastas with sauces
Gluten-free sandwiches
Oat flapjacks
Lamb shanks

Phase three:
Fewer processed foods
Tofu with rice noodles
Baked potato with tuna mayonnaise
Chicken kebabs in peanut satay
Chicken drumsticks and wings
Liver and bacon with potatoes

Phase four:
Vegetarian
Baked butternut squash
Spanish omelette
Baked potato with cheese
Houmous on gluten-free toast
Gluten-free pizza

Phase five:
Raw vegan
Kale salad with sprouted seeds
Smoothies and juices
Raw chocolate
Veggie nut mix
Nori rolls
Houmous and sprouted sunflower seeds on rice cakes
Raw carrot cake

Phase six:
Cooked and raw vegan
Quinoa and lentil burger
Baked sweet potato with houmous
Kitchari
Leek and coconut curry
Raw chocolate brownies
Amaranth porridge

All about ME

Around 250,000 people in the UK have been diagnosed with CFS (chronic fatigue syndrome) or ME. As happened to Kate, it tends to appear around the age of 20 and up to 45 or so. Most cases are mild to moderate, allowing sufferers to function and lead semi-normal lives, although it can be severe, as it was in Kate's case, where even brushing your teeth can seem an impossibility.
Nobody is sure what causes it, although a viral infection, problems with the immune system, hormonal imbalances and psychiatric problems like stress or depression have all been cited.
CFS/ME is diagnosed when fatigue persists for several months and no other explanation for it can be found. Conventional treatment is limited, but can include cognitive behavioural therapy (CBT), exercise programmes, and medications to control pain, nausea and insomnia.
Although the terms are interchangeable, CFS is more often diagnosed when there is no evidence of brain or spinal cord inflammation, whereas myalgic encephalomyelitis (ME) is just that: 'myalgic' means muscle aches or pains, and 'encephalomyelitis' means inflammation of the brain and spinal cord.


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