From The Mail Online 22 January 2015. Words by Mail Online health editor Anna Hodgekiss.
A former cancer patient says she would rather still have the deadly disease than the chronic fatigue syndrome that has plagued the last decade of her life. Jenny Andrews, 42, says the condition has made her life grind to a halt over the past 10 years – and she fears she may never recover.
Not only has it forced her to quit her job as a scientist and her beloved hobby of belly dancing, but at times has meant she can barely lift her head from the pillow.
‘At my worst, I had dizziness when standing, sheer exhaustion so bad I couldn’t even go out – never mind continue my scientific studies,’ she told MailOnline.
‘I hated smells, lights, and my brain felt continually foggy and couldn’t read anymore or even concentrate on daytime TV.’
Ten years ago, Ms Andrews, from Nottinghamshire, was diagnosed with bladder cancer.
‘But the chronic fatigue syndrome – or CFS as it is known – is so much worse than that,’ she said.
‘Chronic fatigue is not in the mind – it is a very physical condition not treated with the gravity it deserves.
‘It’s not one symptom, it’s a collection of symptoms and it has robbed me of my life, my career and maybe even the opportunity to have children.’
She added: ‘I was unlucky to get bladder cancer at 32, as it tends to strike older people. But I would honestly say CFS is worse.
‘I don’t want to offend anyone, but having cancer had less of an impact on my life than this did – and was quicker to treat.
‘I was fortunate not to lose both my kidneys or need a hysterectomy.
‘Surgery and cancer treatment are different – you do get over it. But with chronic fatigue, it just goes on and on.’
Chronic fatigue syndrome is also know as fibromyalgia or ME.
The condition affects between one and four million in the US and millions more worldwide – and the combination of symptoms can devastate a patient’s life for decades.
Putting a definitive figure on the number of sufferers is difficult, because the condition can be difficult to diagnose.
Jose Montoya, a professor of medicine at Stanford University and a leading expert in CFS, has described the condition as ‘one of the greatest scientific and medical challenges of our time’.
He said: ‘Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.’
Ms Andrews’ problems began when she noticed blood clots in her urine – and tests revealed the devastating news that she had bladder cancer.
After surgery to remove the the tumour she underwent five years of immunotherapy treatment.
This involved injecting the TB vaccine into her bladder every few months to get rid of the cancer.
During this time, she also experienced a range of family bereavements and traumas that had an impact on her life and stress levels.
‘My body just shut down, I was living on coffee and my adrenal glands gave up – they couldn’t cope.
‘Everything started to mount up, and so my boyfriend Dan and I booked a trip of a lifetime to South Africa to get away from it all.
‘I had all the necessary vaccines, including yellow fever and malaria and then went on holiday.
‘But I found I was so exhausted I just couldn’t really enjoy it.’
Ms Andrews’ health continued to deteriorate.
But numerous visits to her doctor didn’t help.
‘He just kept putting everything down to the cancer I’d had and the treatment,’ she said.
‘Some of the advice I got was incredible,’ she continued. ‘I was once told to go and drink a glass of wine, given antidepressants and told to exercise.
‘For five years, I was getting worse and worse then a bit better – as in a good day would be getting myself to the toilet by myself.
‘I looked at myself in my dressing gown and realised I had no life.’
She describes the condition as having ‘horrendous nausea and then being thrown on a ship – and feeling sea sick – with bags of potatoes tied to each limb – and then someone asking you to run a marathon.
‘And that is just to get to the toilet. ‘
It was only after a friend recommended she visit an ME website that she realised what was wrong with her.
‘I read everything and all the symptoms resonated with me: severe fatigue, lack of stamina, dizziness upon standing up, no concentration, no appetite.
‘I burst into tears with the realisation it wasn’t the cancer or my cancer treatment – it was the fact I suffered from chronic fatigue syndrome.’
The condition has long divided the medical world.
Sceptics say the condition is ‘all in the mind’ and write sufferers off as malingerers.
However research published in October last year revealed the brains of those diagnosed with chronic fatigue syndrome are distinctly different to those of healthy people.
The abnormalities identified in this study, published in the journal Radiology, will, it is hoped, go some way to helping resolve those ambiguities.
The team of researchers at Stanford University School of Medicine believe their findings could lead to more definitive diagnoses of the syndrome and better treatments.
The combination of symptoms can devastate a patient’s life for decades.
Ms Andrews said: ‘Over the years I have met people who tell me I am not ill.
‘I also know people who are not as lucky as me, whose family say they are lazy and therefore lost contact with them.
‘But it is medical people who have let me down the most.
‘I’ve been told I’m not ill, to have a glass of wine and that I’m actually depressed. There comes a point where you start to doubt yourself and think “am I”?
She continued: ‘However with depression, you have no motivation, feel like there is no point to anything and have no fun any more.
‘I do have the motivation, drive and ambition to get up and do things – just not the physical strength.
‘Some people think I’m making it up and being lazy – it’s horrendous.
‘But I can tell you, taking 15 minutes just to climb the stairs is not fun. Nor is waiting for an hour each morning before you can set foot out of bed because you feel so dizzy.
‘At the moment, I’m lucky if I get out of the house once a week for a coffee.’
She says there were times she could not even swallow and needed a towel under her chin. And days when she had to force herself to sit up in bed.
A year into her illness, she and her boyfriend Dan, a freelance photographer, married. ‘I was so exhausted I had to keep lying down at points in the day,’ she recalled.
Today, she credits her husband with keeping her alive. ‘I would be stuck upstairs in bed, unable to move, and he would bring me a Thermos of soup before he went to work.
‘He is a lovely man, supportive, and I’m very lucky to have him,’ she said.
She attributes her very gradual recovery to following protocals in a book recommended by a friend: Diagnosis & Treatment of Chronic Fatigue Syndrome, by Dr Sarah Myhill.
A scientist herself, Ms Andrews was keen to validate the claims being made.
But lacking the mental energy, she asked another friend with a science background to – who agreed the principles were worth trying.
‘Dr Myhill was the first person who put things in black and white for me,’ says Ms Andrews.
‘Basically, if you keep pushing yourself and crashing, you will be iller for longer.
‘It’s all about learning to manage it, getting enough sleep, etc.
‘The great irony in the NHS is that hardly anyone understands the condition.
‘I’ve been told that in order to have the best chance of recovery, you need to start getting treatment within the first six months.
‘But many doctors say you have to have had symptoms for six months before you are diagnosed with CFS.
Having read the book, Ms Andrews began following principles in it.
‘Dr Myhill’s treatment plan is based on five key elements,’ she told MailOnline.
‘These are rest and pacing, eating a Stone Age diet, taking various nutritional supplements, getting enough sleep and tests to see what chemicals are inside your body.’
And while she admits she is not yet fully well, she believes it has been a great help to her health.
‘Dr Myhill and her book have been instrumental in helping me progress from lying in the dark unable to speak or swallow to someone who hopes to run her own business from home one day,’ she said.
She added: ‘It was a relief to find a medical professional who not only believes this illness exists and has a physical cause(s) – and who strives for the truth behind what causes it rather than hiding behind inadequate guidelines.
I don’t actually care whether ME is a physical or mental disorder, as I don’t carry a stigma about mental illness.
‘What I do care about is accurate research and information that leads to treatments that are effective and that work for everyone.
‘If the psychological treatments worked then we’d all be doing them and getting better – but we’re not.
Tony Britton, of the ME Association, told MailOnline: ‘We are not surprised by Jenny saying having chronic fatigue syndrome feels worse than those awful days when she had bladder cancer.
‘When people have cancer they can generally access speedy and effective treatment, research is rapidly moving forward to reduce the death toll, come up with individualised treatments, and providing a good quality of life as long as possible.
‘The whole medical and nursing establishment can get behind you.’
He added that by contrast, CFS – which is also known as M.E. (myalgic encephalomyelitis) – is poorly understood.
‘There are no universally recognised biomarkers, diagnosis can be a difficult and lengthy process and, although the situation is improving, many doctors are still very unsympathetic,’ he explained.
‘They’ve been spun the myth that there are psychological quick fixes to this illness and they’ve bought into that myth – prescribing antidepressants here, talking therapies there and maybe a bit of dodgy exercise therapy, which often makes patients feel worse.’
He added: ‘Patients on the receiving end of this nonsense are pig sick and tired of it all.’
‘We desperately need major investments in realistic research into the biomedical causes of this illness as we search for the cure.
‘The vast majority of people with M.E. miss the lives they used to have and would love to become full, tax-paying members of society once again.’
For more information, visit: www.meassociation.org.uk