HOW WE LEARNED TO LIVE WITH M.E.
Please note: this blog is still in the process of being set up and the following post is a draft only -- more later.
I am particularly interested in this article because someone I know, who was diagnosed with ME fourteen years ago, and was affected severely, has recently been tested for Lyme Disease and diagnosed as having chronic Lyme Disease. I must phone her and see how she is getting on with the new treatment.
The following article appeared in the Daily Mail (UK) 22 May 2001 written by Becky Morris - entitled:
Fresh hope for ME sufferers
Last year, Good Health told the moving story of devoted couple Harry and Nuala Bingham. He was the Lord Chief Justice's 34-year-old son who gave up a brilliant career in the City to nurse his wife, who was struck down with a post-viral condition so mysterious that it did not even have a name.
Doctors had told Nuala, also 34, that her condition was chronic and there was nothing more they could do. She faced a life of almost complete immobility and permanent exhaustion.
Now, a year on, we revisit the couple to find that, remarkably, cutting-edge treatments tracked down on the internet are slowly restoring Nuala to health. A year ago, Nuala Bingham was so weak and ill she had to be carried down the stairs by her husband.
She had only two hours of energy each day, and spent the rest of the time lying, exhausted and fragile, in a dark room. She was nursed constantly by her devoted husband Harry.
Nuala had been diagnosed with a rare and complex post-viral condition similar to ME (myalgic encephalomyelitis). She had just 3 per cent of her former energy, could produce no viable hormones and was prey to all manner of secondary infections.
Five years ago, just a year after she married Harry, she had suffered encephalitis, a brain infection which left her with so little mental energy that, at times, she could not even talk. Today, though pale and slender, she walks unaided into the drawing room of her quiet Oxford home.
'I have really started to perk up - it's been wonderful,' she says. 'After five years of illness, it is amazing to be able to get things done. I can even help Harry. It has transformed our lives.'
Her improvements are a result of three radical and, in this country at least, unheard-of treatments.
All were discovered on the internet by the couple, and ordered from the U.S. to be administered by open-minded British doctors. The first is, perhaps, the most experimental. Every Friday, Nuala injects herself with 0.15mg of Human Growth Hormone (HGH) to help her muscles repair. It is a naturally-occurring hormone usually produced in the pituitary gland in the brain.
'On the internet, we saw interesting medical research which suggested that Human Growth Hormone plays a more vital role in repairing the body than anyone had realised,' says Nuala.
'It took about three weeks to take effect, but the difference is striking. I feel much stronger and more energetic. I can feed myself, go to the bathroom on my own, and have even walked upstairs instead of being carried by Harry.'
The second treatment involves twice-daily injections of heparin, a blood-thinning drug. 'I suffer from chronic infections by certain bacteria and viruses,' says Nuala.
Research has found that these infections cause the blood to thicken, because it suits the bacteria to have clogged arteries and veins in which they can easily reproduce.'
Heparin, an anticoagulant, helps Nuala's circulation. 'My doctor believes it is helping to get my blood moving, taking away toxins and increasing oxygen supply.' Nuala's final new treatment is one which, she says, 'had her GP rocking back in his chair with shock'.
'Because of my illness, I had fallen prey to long-term secondary infections that can really take a toll on your health and energy.
Standard medical practice is for antibiotics to be taken for a fortnight at most. But we found that some American patients with ME and Gulf War syndrome have been on antibiotics for five or more years, with good results.
'We had a bit of persuading to do when we went to my GP, but we'd done our research on the internet and got hold of copies of the medical papers from the Bodleian Library in Oxford. 'Now, I have been taking doxycycline for two months and already feel better. Constant infections are a strain on the immune system, cause chronic fatigue and can be near-impossible to shake off. But this treatment seems to be working.'
Nuala has also been tested for food allergies at the pioneering clinic at the Breakspear Hospital in Hertfordshire. There, she was given a list of 80 foods she can tolerate, and she now rotates her diet so that her body is not given a chance to develop a reaction.
Things are looking much brighter for the Binghams. 'We may never know exactly what caused my illness, but we are trying all sorts of different ways to deal with the symptoms,' says Nuala.
'And, gradually, it is working. I started all these treatments three months ago and have been going from strength to strength.
'There are thousands of people in this country with conditions such as ME and post-viral illnesses. My advice to them is to get on to the internet and seek out solutions.
- - -
Footnotes given in above article:
URL: www.femail.co.uk/pages/standard/article.html?in_article_id=48150&in_page_id=169
(c) 2001 Associated New Media Limited
Send posts to mailto:CO-CURE@listserv.nodak.edu
Join or leave the list at http://www.co-cure.org/sub.htm
Select list topic options at http://www.co-cure.org/topics.htm
Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
- - -
The following story is dated Friday 11 February, 2000:
http://www.thisisoxfordshire.co.uk/oxfordshire/archive/2000/02/11/TOPNEWS0VQ.html]
With tender loving care
High-flying financial adviser Harry Bingham gave up a glittering career that took him all over the world to look after his desperately-ill wife, writes Zahra Borno.
The 32-year-old, of Iffley Road, Oxford, has dedicated his life to caring for Nuala.
Nuala, also 32, suffers from a complex viral disease, which affects every part of her body, including her nerves, muscles and digestive system. It leaves her lacking energy and unable to look after herself.
Her immune system is so badly affected she is vulnerable to every bacterium and virus that comes her way.
After graduating from Balliol College, Oxford, Harry landed a high-powered job in the City which took him on 100 business trips abroad each year. He had a fantastic career ahead of him, advising businessmen on buying and selling companies, but the couple discovered Nuala was suffering from the energy-sapping disease myalgic encephalomyelitis (ME). By 1996 the viral disease had begun to take over and Nuala was becoming more seriously ill.
Devoted Harry knew he had to put his marriage before his career - and gave up his job to care for her.
He has become responsible for running the home and nursing Nuala, with the help of only a part-time cleaner.
It was a tough decision to make, but Harry said when it came to the crunch he didn't hesitate.
He said: "I thrived on my job in the City and really enjoyed flying all over the world. It was quite a high-powered job but when Nuala became really sick I had to get my priorities straight. "There was no way I could have continued with my job with Nuala as sick as she was.
"She is the focal point of my life."
Nuala said: "I felt huge guilt that Harry had to give up so much. I knew how much his job meant. Having Harry at home, however, was the kindest, nicest thing.
"I used to think I'd lost everything that makes someone feel worthwhile.
"But I still feel human because that's what I see reflected when I look into Harry's eyes.
"Whatever depths and curious rewards this illness has brought, we would never choose it. Day-to-day life is harder and more wearing than I would wish on my worst enemy."
While Harry was nursing Nuala he decided to fulfil a childhood ambition and write a novel. He said the book provided an important refuge when the strain of looking after Nuala took its toll. He said: "I would have gone crazy if it wasn't for the book. I used to write it when I was sitting by Nuala's bedside.
"Part of me has had problems with adapting to my new life. It just goes to show you can never predict how things will turn out."
The book, called Money Makers, tells the tale of a multi-millionaire who dies leaving a bizarre twist in his will. It took 18 months to write and has just been published by HarperCollins, at £5.99.
HOW WE LEARNED TO LIVE WITH M.E.
The following article appeared in the Suday Express on August 1, 2004. A friend sent me the 3-page cutting and I found a copy of it online at the below listed sources. Here is a copy, in full:
Once derided as "yuppie flu", ME is a serious, incurable condition that can make the simplest tasks impossible - as Nuala Bingham knows only too well. Her husband, Harry, tells how they refused to let it stop them leading happy and productive lives.
The year is 1996. I'm 29 years old. I've just been headhunted by an investment bank. My new colleagues are fantastic; the money is awesome; and I get two months' holiday before starting work.
To be sure. there are one or two minor problems. My wife. Nuala, has been ill with ME for the past 10 years. The symptoms are well known: debilitating exhaustion, brain fog. a kind of mental and physical parking brake that gets locked on. But that's the dark side of it. She's been getting better and has started to train. part time, as a psychotherapist.
Then we go away on holiday. Eight weeks in Spain, in a wonderful old villa crammed between the mountains and the sea. I run and swim. Nuala reads and sunbathes. We pick plums and lemons from the trees outside our bedroom, avocados from the grove beneath the house.
And then it happens. Not fast, not overnight, but like a slow-motion fall into a nightmare. Nuala becomes more ill. First a cold, then flu, then something more bronchial than flu, then an eye problem that turns out to be conjunctivitis. And the ME, which had been so gradually relenting, is back, fiercer and fouler than she's ever had it.
We cut short our holiday and run back to England. The various specific ailments she has are treated one by one. But nobody is interested in the abrupt decline in her overall health. There is no specialist anywhere who actually cares that an attractive. bright, 30 year old is having her life trashed. A few weeks later, Nuala is still terribly ill, but my new job starts and I can't afford to let it go. I hire a care assistant for Nuala and start work.
This arrangement works up to a point. Nuala is now mostly bed-bound, but more alarming is her neurological condition. Light. sound and movement are, for most people, the ingredients of life itself. But for Nuala, each of these things has become painful, almost unbearable. She spends much of her day in a dark and silent room. She's too ill to read, to watch the telly, to speak to people.
Things go on getting worse. Our care assistant is great, but there's no substitute for being there myself. So I start working two days a week from home. Then three. In June that year, I quit completely.
That was six years ago. And, little as we've wanted to admit it, Nuala has made no progress. The physical side is as bad. The neurological side is worse.
People's attitudes have varied over the years but, thankfully. there aren't many now who regard ME as trivial. In fact, we've found people very kind and sympathetic. But the disease still has a low profile. It's not widely understood that 20 per cent of sufferers never get better. Nor that bad ME is as crippling as any disease you care to name.
One American specialist measured the ability of various patient groups to function normally. Those with ME often got lower scores than Aids patients in the last week of their lives. Another researcher found that ME "caused greater functional severity than heart disease, virtually all forms of cancer and all other chronic illnesses". So the next time you hear someone talk about "yuppie flu", please thump them.
We've seen doctors, of course. Not NHS ones, because there aren't any. The best the average ME sufferer can hope for from the NHS is a kind but uninformed GP. In most cases, you will simply be offered cognitive behaviour therapy, which encourages sufferers to raise their exercise threshold. This may be modestly helpful for some, but can actually worsen the condition of the more seriously ill. Those with severe ME have radically reduced aerobic capacity. Telling them to exercise more doesn't kick start them - it just kicks them.
Current research suggests the illness is multi-causal - that is, lots of things can give it to you. "People's attitudes have varied, but thankfully there aren't many now who regard ME as trivial"
Yet while MS (and numerous cancers) have no known cause or cure, neither group of patients is maltreated or neglected by the system in the way ME sufferers are. Fortunately for us, though, a handful of brave doctors and medical researchers are swimming against the tide of neglect. There is work being done, breakthroughs are being made and patients are being cared for. To begin with, we were assiduous about trying every new approach. Travelling was hard, but I'd built a bed in the back of the car. I'd darken the windows and off we'd set. Our results were mixed. The more we learned about Nuala's condition. the more terrifyingly total it seemed to be. We found ways of managing symptoms, but nothing that came close to a cure.
A lot of things we tried were naturopathic. Most people with ME will have digestive problems, no matter how good their diet. When we had Nuala tested, we found a range of abnormalities. So we improved her (already good) diet, cutting out allergenic foods. taking key vitamins, minerals and probiotic supplements. Naturopathic interventions help up to 40 per cent of sufferers – but though they helped Nuala to stabilise, they did little to bring about improvement.
Of the other things we tried. from meditation through to allergy desensitisation, the most helpful was a blood-thinning drug called Heparin. The self-administered injections bring blood coagulability (stickiness) down to normal levels and also have an immune-boosting effect. Before, Nuala had an elevated temperature nearly all the time. These days that permanent low grade flu feeling is a thing of the past.
But a cure remained elusive, Little by little, our attention shifted. Instead of obsessing over the illness, we began to try to
live with it. Now we asked ourselves: 'How can we make a worthwhile life from what we have?" The normal answers - kids, jobs, social life, hobbies - just didn't apply to us. Before her illness, Nuala had been a very dynamic type, and I had been an adventure-loving international banker. Adjusting to the narrowness of our new life was a challenge of the profoundest kind.
Three things saved us. The first - this is ridiculous, but I'm afraid it's true - was getting dogs. Around the time when we would have been having kids, we bought ourselves a puppy. Then another. Then a third. All of a sudden, instead of silence, our house became full of life. We had young beings to care for and our house felt like a young, joyful, lively place: a sick-house no longer.
The second thing was family. In the rush of our 20s, we hadn't exactly drifted away from our families, but somehow a busy and crowded life often seemed to intrude. The shock of illness changed our family relationships for the better. We're closer to all our parents and siblings than we ever were before.
And lastly, we found pleasure in the most unexpected gift of all. When I gave up work, I needed some other way to earn money. I'd always thought banking was so exciting that somebody should write a book about it. So I did. That book (The Money Makers) found a publisher and sold well. The publishers wanted a second book and they wanted it soon.
I began talking ideas through with Nuala. Mine were good, but hers were often better. We talked about plot, character, pacing, atmosphere, romance - everything. I was the one who actually put words on a page, but she was my writing partner. We'd go over chapters, arguing about what worked and what didn't, The arrangement worked so well for the second book that we worked more closely on the third. And then the fourth... Just as we had begun to accept the new conditions of our life, there came a letter from our doctor. He suspected that Nuala might be carrying bacteria that wouldn't show up in normal tests. He'd been researching new diagnostic techniques and offered to test her.
Within days, a blood sample of Nuala's was under the microscope - and came back strongly positive for the bacteria in question, borrelia, which is implicated in Lyme disease. Our outlook changed completely. Viruses are hard to treat, but bacteria can be killed. The suggested course of treatment was high dose antibiotics combined with (yes. really) low-dose arsenic - a combination that Alexander Fleming recommended, though it's little used now. The treatment offered the hope of a real cure but it also promised a stormy ride. As bacteria are killed off, the body has to deal with a flood of bacterial debris. This can cause the patient to feel awful - although, for once, in a good cause.
Nothing is guaranteed. The borrelia bacteria can live in several different states and will adapt from one to another when under threat. What's more, having lived in Nuala's body for so long, they have learned how to live under the radar of her immune system, and made themselves at home in the places hardest for drugs to reach. Our doctor thinks Nuala's course of treatment will need to last months. Even if it succeeds, she may always be dependent on drugs. Nuala has finally started a course of aggressive antibiotic treatment. It's still very early days. but just possibly a corner has been turned. It's too soon to say. But here's to hoping.
Harry and Nuala's ME tips: Take this illness seriously. You have a very severe condition and you can't get better if you over-exert yourself. The longer you have the Illness the lower your chances of recovery, so get real about it early on.
Sort out your diet. You know what you shouldn't eat (sugar, caffeine, alcohol, additives, and the bad carbohydrates - white
bread, white rice, potatoes). You also know what you should eat (plenty of fruit, veg and good quality protein). So do it!
Cut out all gluten and dairy produce completely for two months. Never cheat. Then, try eating dairy again and see how you feel. Wait two weeks. Then try eating gluten. See how you feel. If you feel worse, then cut them out for good.
Take really good multivitamin and mineral supplements. All ME sufferers suffer from poor digestion and will be low in nutrients, no matter how good the food they eat. We'd also recommend supplementing with CoQ10, NADH, vitamin B12, magnesium and fish oils (all available from health food shops).
Aim to get nine hours' good sleep a night.
Become expert in your Illness. Read From Fatigued To Fantastic by Jacob Teitelbaum (£12.99, Avery, page 66), and use the Internet - www. immunesupport. com is good.
Get your doctor onside. GPs receive almost no training in ME but you can expect them a) to believe you, and b) to support you when you make reasonable requests for help. If your GP lives in the Stone Age, then move on and leave them there.
Do everything at once. The Importance of this tip can't be overstated. Some people try a multivitamin for a while, then stop
and try magnesium, then stop that and try something else. Get serious. You need to take care of your diet, your supplements, your sleep and your lifestyle simultaneously.
Find something positive to live for. We bought puppies and wrote books. What will you do?
-----------------------------------------------------------------------
http://www.tangled-web.co.uk/crimedigests/digests2000/harpercosp00.html
The Money Makers is Harry Bingham's first novel. Yet were it not for a severe illness which suddenly afflicted his wife, he might never have written at all. Bingham, an Oxford graduate with a highly successful career in the City, abandoned his high-flying lifestyle in order to care for his wife.
Bingham's life was dramatically altered in 1997 when his wife, Nuala, developed a complex viral illness. Bingham had first met his wife, at the age of 21, in New York, at a J.P. Morgan training programme, where they discovered a strange number of coincidences: they had been born on the exact same evening, and at hospitals just a mile or two apart in London. Unbeknown to them both they had been exact contemporaries at Oxford, even sharing mutual friends.
Bingham went on to a distinguished career in the City, working in the world of corporate tax dodging, and in Mergers and Acquisitions. His deals included the &45 million take-over of The Park Lane Hotel pie for ITT Shannon, the first attempt at the &20 billion merger of Guinness pie and Grand Metropolitan pie, and the refinancing of Eurotunnel. All of which has proved to be invaluable for his novel.
The Money Makers are three sons vying to attain their father's massive inheritance. Their father, a wealthy industrialist, has died leaving them nothing.....Except the chance of winning the entire inheritance for the son who has one million pounds in the bank by the end of the year. Startled out of their indulgent lives, the sons begin to compete madly against each other. Two of them go into the City, the eldest buys a run-down factory. The race to be the first to make &1,000,000 is on.....
Bingham is the eldest son of Lord Chief Justice, Long Bingham of Cornhill. His brother Kit is also an inspiring author and editor OF Governance magazine, and his sister, Kate is a Partner at Schroder Ventures. He presently lives in Oxford with his wife and two dogs
- - -
Harry Bingham is the author of The Sons Of Adam (HarperCollins. £6.99 - see Express Bookshop, page 66). For more information contact Action for ME (01749 670799: www. afme. org. uk )
Chyna posted this at a forum on Myalgic Encephalomyelitis:
http://www.fazed.com/phpBB/viewtopic.php?topic=3669&forum=4&0
Also, Fay posted the same article at another forum:
http://brain.hastypastry.net/forums/showpost.php?p=246985&postcount=1
http://brain.hastypastry.net/forums/showthread.php?t=29783
Here's what Fay wrote: "Finally, ALREADY, it's happened! National newpaper coverage on the link between CFS (m.e., and that includes Fibro) and LYME DISEASE. I cannot believe I've read this in a national newspaper. It's fantastic. See, I'm not just a lone raving lunatic! This ALSO APPLIES to people with symptoms of CFS or Fibro (or M.S. and other neuro diseases) who do not have a CFS diagnosis. Anyway, the article is pasted in two parts below:
Also, Fay wrote: "I am very pleased that this is already getting national media attention. As some here may know, I had a CFS diagnosis for over 14 years when it turned out that what I in fact had is CHRONIC LYME DISEASE. I'm now being treated - similarly to the person in the article."
I am particularly interested in this article because someone I know, who was diagnosed with ME fourteen years ago, and was affected severely, has recently been tested for Lyme Disease and diagnosed as having chronic Lyme Disease. I must phone her and see how she is getting on with the new treatment.
The following article appeared in the Daily Mail (UK) 22 May 2001 written by Becky Morris - entitled:
Fresh hope for ME sufferers
Last year, Good Health told the moving story of devoted couple Harry and Nuala Bingham. He was the Lord Chief Justice's 34-year-old son who gave up a brilliant career in the City to nurse his wife, who was struck down with a post-viral condition so mysterious that it did not even have a name.
Doctors had told Nuala, also 34, that her condition was chronic and there was nothing more they could do. She faced a life of almost complete immobility and permanent exhaustion.
Now, a year on, we revisit the couple to find that, remarkably, cutting-edge treatments tracked down on the internet are slowly restoring Nuala to health. A year ago, Nuala Bingham was so weak and ill she had to be carried down the stairs by her husband.
She had only two hours of energy each day, and spent the rest of the time lying, exhausted and fragile, in a dark room. She was nursed constantly by her devoted husband Harry.
Nuala had been diagnosed with a rare and complex post-viral condition similar to ME (myalgic encephalomyelitis). She had just 3 per cent of her former energy, could produce no viable hormones and was prey to all manner of secondary infections.
Five years ago, just a year after she married Harry, she had suffered encephalitis, a brain infection which left her with so little mental energy that, at times, she could not even talk. Today, though pale and slender, she walks unaided into the drawing room of her quiet Oxford home.
'I have really started to perk up - it's been wonderful,' she says. 'After five years of illness, it is amazing to be able to get things done. I can even help Harry. It has transformed our lives.'
Her improvements are a result of three radical and, in this country at least, unheard-of treatments.
All were discovered on the internet by the couple, and ordered from the U.S. to be administered by open-minded British doctors. The first is, perhaps, the most experimental. Every Friday, Nuala injects herself with 0.15mg of Human Growth Hormone (HGH) to help her muscles repair. It is a naturally-occurring hormone usually produced in the pituitary gland in the brain.
'On the internet, we saw interesting medical research which suggested that Human Growth Hormone plays a more vital role in repairing the body than anyone had realised,' says Nuala.
'It took about three weeks to take effect, but the difference is striking. I feel much stronger and more energetic. I can feed myself, go to the bathroom on my own, and have even walked upstairs instead of being carried by Harry.'
The second treatment involves twice-daily injections of heparin, a blood-thinning drug. 'I suffer from chronic infections by certain bacteria and viruses,' says Nuala.
Research has found that these infections cause the blood to thicken, because it suits the bacteria to have clogged arteries and veins in which they can easily reproduce.'
Heparin, an anticoagulant, helps Nuala's circulation. 'My doctor believes it is helping to get my blood moving, taking away toxins and increasing oxygen supply.' Nuala's final new treatment is one which, she says, 'had her GP rocking back in his chair with shock'.
'Because of my illness, I had fallen prey to long-term secondary infections that can really take a toll on your health and energy.
Standard medical practice is for antibiotics to be taken for a fortnight at most. But we found that some American patients with ME and Gulf War syndrome have been on antibiotics for five or more years, with good results.
'We had a bit of persuading to do when we went to my GP, but we'd done our research on the internet and got hold of copies of the medical papers from the Bodleian Library in Oxford. 'Now, I have been taking doxycycline for two months and already feel better. Constant infections are a strain on the immune system, cause chronic fatigue and can be near-impossible to shake off. But this treatment seems to be working.'
Nuala has also been tested for food allergies at the pioneering clinic at the Breakspear Hospital in Hertfordshire. There, she was given a list of 80 foods she can tolerate, and she now rotates her diet so that her body is not given a chance to develop a reaction.
Things are looking much brighter for the Binghams. 'We may never know exactly what caused my illness, but we are trying all sorts of different ways to deal with the symptoms,' says Nuala.
'And, gradually, it is working. I started all these treatments three months ago and have been going from strength to strength.
'There are thousands of people in this country with conditions such as ME and post-viral illnesses. My advice to them is to get on to the internet and seek out solutions.
- - -
Footnotes given in above article:
URL: www.femail.co.uk/pages/standard/article.html?in_article_id=48150&in_page_id=169
(c) 2001 Associated New Media Limited
Send posts to mailto:CO-CURE@listserv.nodak.edu
Join or leave the list at http://www.co-cure.org/sub.htm
Select list topic options at http://www.co-cure.org/topics.htm
Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
- - -
The following story is dated Friday 11 February, 2000:
http://www.thisisoxfordshire.co.uk/oxfordshire/archive/2000/02/11/TOPNEWS0VQ.html]
With tender loving care
High-flying financial adviser Harry Bingham gave up a glittering career that took him all over the world to look after his desperately-ill wife, writes Zahra Borno.
The 32-year-old, of Iffley Road, Oxford, has dedicated his life to caring for Nuala.
Nuala, also 32, suffers from a complex viral disease, which affects every part of her body, including her nerves, muscles and digestive system. It leaves her lacking energy and unable to look after herself.
Her immune system is so badly affected she is vulnerable to every bacterium and virus that comes her way.
After graduating from Balliol College, Oxford, Harry landed a high-powered job in the City which took him on 100 business trips abroad each year. He had a fantastic career ahead of him, advising businessmen on buying and selling companies, but the couple discovered Nuala was suffering from the energy-sapping disease myalgic encephalomyelitis (ME). By 1996 the viral disease had begun to take over and Nuala was becoming more seriously ill.
Devoted Harry knew he had to put his marriage before his career - and gave up his job to care for her.
He has become responsible for running the home and nursing Nuala, with the help of only a part-time cleaner.
It was a tough decision to make, but Harry said when it came to the crunch he didn't hesitate.
He said: "I thrived on my job in the City and really enjoyed flying all over the world. It was quite a high-powered job but when Nuala became really sick I had to get my priorities straight. "There was no way I could have continued with my job with Nuala as sick as she was.
"She is the focal point of my life."
Nuala said: "I felt huge guilt that Harry had to give up so much. I knew how much his job meant. Having Harry at home, however, was the kindest, nicest thing.
"I used to think I'd lost everything that makes someone feel worthwhile.
"But I still feel human because that's what I see reflected when I look into Harry's eyes.
"Whatever depths and curious rewards this illness has brought, we would never choose it. Day-to-day life is harder and more wearing than I would wish on my worst enemy."
While Harry was nursing Nuala he decided to fulfil a childhood ambition and write a novel. He said the book provided an important refuge when the strain of looking after Nuala took its toll. He said: "I would have gone crazy if it wasn't for the book. I used to write it when I was sitting by Nuala's bedside.
"Part of me has had problems with adapting to my new life. It just goes to show you can never predict how things will turn out."
The book, called Money Makers, tells the tale of a multi-millionaire who dies leaving a bizarre twist in his will. It took 18 months to write and has just been published by HarperCollins, at £5.99.
HOW WE LEARNED TO LIVE WITH M.E.
The following article appeared in the Suday Express on August 1, 2004. A friend sent me the 3-page cutting and I found a copy of it online at the below listed sources. Here is a copy, in full:
Once derided as "yuppie flu", ME is a serious, incurable condition that can make the simplest tasks impossible - as Nuala Bingham knows only too well. Her husband, Harry, tells how they refused to let it stop them leading happy and productive lives.
The year is 1996. I'm 29 years old. I've just been headhunted by an investment bank. My new colleagues are fantastic; the money is awesome; and I get two months' holiday before starting work.
To be sure. there are one or two minor problems. My wife. Nuala, has been ill with ME for the past 10 years. The symptoms are well known: debilitating exhaustion, brain fog. a kind of mental and physical parking brake that gets locked on. But that's the dark side of it. She's been getting better and has started to train. part time, as a psychotherapist.
Then we go away on holiday. Eight weeks in Spain, in a wonderful old villa crammed between the mountains and the sea. I run and swim. Nuala reads and sunbathes. We pick plums and lemons from the trees outside our bedroom, avocados from the grove beneath the house.
And then it happens. Not fast, not overnight, but like a slow-motion fall into a nightmare. Nuala becomes more ill. First a cold, then flu, then something more bronchial than flu, then an eye problem that turns out to be conjunctivitis. And the ME, which had been so gradually relenting, is back, fiercer and fouler than she's ever had it.
We cut short our holiday and run back to England. The various specific ailments she has are treated one by one. But nobody is interested in the abrupt decline in her overall health. There is no specialist anywhere who actually cares that an attractive. bright, 30 year old is having her life trashed. A few weeks later, Nuala is still terribly ill, but my new job starts and I can't afford to let it go. I hire a care assistant for Nuala and start work.
This arrangement works up to a point. Nuala is now mostly bed-bound, but more alarming is her neurological condition. Light. sound and movement are, for most people, the ingredients of life itself. But for Nuala, each of these things has become painful, almost unbearable. She spends much of her day in a dark and silent room. She's too ill to read, to watch the telly, to speak to people.
Things go on getting worse. Our care assistant is great, but there's no substitute for being there myself. So I start working two days a week from home. Then three. In June that year, I quit completely.
That was six years ago. And, little as we've wanted to admit it, Nuala has made no progress. The physical side is as bad. The neurological side is worse.
People's attitudes have varied over the years but, thankfully. there aren't many now who regard ME as trivial. In fact, we've found people very kind and sympathetic. But the disease still has a low profile. It's not widely understood that 20 per cent of sufferers never get better. Nor that bad ME is as crippling as any disease you care to name.
One American specialist measured the ability of various patient groups to function normally. Those with ME often got lower scores than Aids patients in the last week of their lives. Another researcher found that ME "caused greater functional severity than heart disease, virtually all forms of cancer and all other chronic illnesses". So the next time you hear someone talk about "yuppie flu", please thump them.
We've seen doctors, of course. Not NHS ones, because there aren't any. The best the average ME sufferer can hope for from the NHS is a kind but uninformed GP. In most cases, you will simply be offered cognitive behaviour therapy, which encourages sufferers to raise their exercise threshold. This may be modestly helpful for some, but can actually worsen the condition of the more seriously ill. Those with severe ME have radically reduced aerobic capacity. Telling them to exercise more doesn't kick start them - it just kicks them.
Current research suggests the illness is multi-causal - that is, lots of things can give it to you. "People's attitudes have varied, but thankfully there aren't many now who regard ME as trivial"
Yet while MS (and numerous cancers) have no known cause or cure, neither group of patients is maltreated or neglected by the system in the way ME sufferers are. Fortunately for us, though, a handful of brave doctors and medical researchers are swimming against the tide of neglect. There is work being done, breakthroughs are being made and patients are being cared for. To begin with, we were assiduous about trying every new approach. Travelling was hard, but I'd built a bed in the back of the car. I'd darken the windows and off we'd set. Our results were mixed. The more we learned about Nuala's condition. the more terrifyingly total it seemed to be. We found ways of managing symptoms, but nothing that came close to a cure.
A lot of things we tried were naturopathic. Most people with ME will have digestive problems, no matter how good their diet. When we had Nuala tested, we found a range of abnormalities. So we improved her (already good) diet, cutting out allergenic foods. taking key vitamins, minerals and probiotic supplements. Naturopathic interventions help up to 40 per cent of sufferers – but though they helped Nuala to stabilise, they did little to bring about improvement.
Of the other things we tried. from meditation through to allergy desensitisation, the most helpful was a blood-thinning drug called Heparin. The self-administered injections bring blood coagulability (stickiness) down to normal levels and also have an immune-boosting effect. Before, Nuala had an elevated temperature nearly all the time. These days that permanent low grade flu feeling is a thing of the past.
But a cure remained elusive, Little by little, our attention shifted. Instead of obsessing over the illness, we began to try to
live with it. Now we asked ourselves: 'How can we make a worthwhile life from what we have?" The normal answers - kids, jobs, social life, hobbies - just didn't apply to us. Before her illness, Nuala had been a very dynamic type, and I had been an adventure-loving international banker. Adjusting to the narrowness of our new life was a challenge of the profoundest kind.
Three things saved us. The first - this is ridiculous, but I'm afraid it's true - was getting dogs. Around the time when we would have been having kids, we bought ourselves a puppy. Then another. Then a third. All of a sudden, instead of silence, our house became full of life. We had young beings to care for and our house felt like a young, joyful, lively place: a sick-house no longer.
The second thing was family. In the rush of our 20s, we hadn't exactly drifted away from our families, but somehow a busy and crowded life often seemed to intrude. The shock of illness changed our family relationships for the better. We're closer to all our parents and siblings than we ever were before.
And lastly, we found pleasure in the most unexpected gift of all. When I gave up work, I needed some other way to earn money. I'd always thought banking was so exciting that somebody should write a book about it. So I did. That book (The Money Makers) found a publisher and sold well. The publishers wanted a second book and they wanted it soon.
I began talking ideas through with Nuala. Mine were good, but hers were often better. We talked about plot, character, pacing, atmosphere, romance - everything. I was the one who actually put words on a page, but she was my writing partner. We'd go over chapters, arguing about what worked and what didn't, The arrangement worked so well for the second book that we worked more closely on the third. And then the fourth... Just as we had begun to accept the new conditions of our life, there came a letter from our doctor. He suspected that Nuala might be carrying bacteria that wouldn't show up in normal tests. He'd been researching new diagnostic techniques and offered to test her.
Within days, a blood sample of Nuala's was under the microscope - and came back strongly positive for the bacteria in question, borrelia, which is implicated in Lyme disease. Our outlook changed completely. Viruses are hard to treat, but bacteria can be killed. The suggested course of treatment was high dose antibiotics combined with (yes. really) low-dose arsenic - a combination that Alexander Fleming recommended, though it's little used now. The treatment offered the hope of a real cure but it also promised a stormy ride. As bacteria are killed off, the body has to deal with a flood of bacterial debris. This can cause the patient to feel awful - although, for once, in a good cause.
Nothing is guaranteed. The borrelia bacteria can live in several different states and will adapt from one to another when under threat. What's more, having lived in Nuala's body for so long, they have learned how to live under the radar of her immune system, and made themselves at home in the places hardest for drugs to reach. Our doctor thinks Nuala's course of treatment will need to last months. Even if it succeeds, she may always be dependent on drugs. Nuala has finally started a course of aggressive antibiotic treatment. It's still very early days. but just possibly a corner has been turned. It's too soon to say. But here's to hoping.
Harry and Nuala's ME tips: Take this illness seriously. You have a very severe condition and you can't get better if you over-exert yourself. The longer you have the Illness the lower your chances of recovery, so get real about it early on.
Sort out your diet. You know what you shouldn't eat (sugar, caffeine, alcohol, additives, and the bad carbohydrates - white
bread, white rice, potatoes). You also know what you should eat (plenty of fruit, veg and good quality protein). So do it!
Cut out all gluten and dairy produce completely for two months. Never cheat. Then, try eating dairy again and see how you feel. Wait two weeks. Then try eating gluten. See how you feel. If you feel worse, then cut them out for good.
Take really good multivitamin and mineral supplements. All ME sufferers suffer from poor digestion and will be low in nutrients, no matter how good the food they eat. We'd also recommend supplementing with CoQ10, NADH, vitamin B12, magnesium and fish oils (all available from health food shops).
Aim to get nine hours' good sleep a night.
Become expert in your Illness. Read From Fatigued To Fantastic by Jacob Teitelbaum (£12.99, Avery, page 66), and use the Internet - www. immunesupport. com is good.
Get your doctor onside. GPs receive almost no training in ME but you can expect them a) to believe you, and b) to support you when you make reasonable requests for help. If your GP lives in the Stone Age, then move on and leave them there.
Do everything at once. The Importance of this tip can't be overstated. Some people try a multivitamin for a while, then stop
and try magnesium, then stop that and try something else. Get serious. You need to take care of your diet, your supplements, your sleep and your lifestyle simultaneously.
Find something positive to live for. We bought puppies and wrote books. What will you do?
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http://www.tangled-web.co.uk/crimedigests/digests2000/harpercosp00.html
The Money Makers is Harry Bingham's first novel. Yet were it not for a severe illness which suddenly afflicted his wife, he might never have written at all. Bingham, an Oxford graduate with a highly successful career in the City, abandoned his high-flying lifestyle in order to care for his wife.
Bingham's life was dramatically altered in 1997 when his wife, Nuala, developed a complex viral illness. Bingham had first met his wife, at the age of 21, in New York, at a J.P. Morgan training programme, where they discovered a strange number of coincidences: they had been born on the exact same evening, and at hospitals just a mile or two apart in London. Unbeknown to them both they had been exact contemporaries at Oxford, even sharing mutual friends.
Bingham went on to a distinguished career in the City, working in the world of corporate tax dodging, and in Mergers and Acquisitions. His deals included the &45 million take-over of The Park Lane Hotel pie for ITT Shannon, the first attempt at the &20 billion merger of Guinness pie and Grand Metropolitan pie, and the refinancing of Eurotunnel. All of which has proved to be invaluable for his novel.
The Money Makers are three sons vying to attain their father's massive inheritance. Their father, a wealthy industrialist, has died leaving them nothing.....Except the chance of winning the entire inheritance for the son who has one million pounds in the bank by the end of the year. Startled out of their indulgent lives, the sons begin to compete madly against each other. Two of them go into the City, the eldest buys a run-down factory. The race to be the first to make &1,000,000 is on.....
Bingham is the eldest son of Lord Chief Justice, Long Bingham of Cornhill. His brother Kit is also an inspiring author and editor OF Governance magazine, and his sister, Kate is a Partner at Schroder Ventures. He presently lives in Oxford with his wife and two dogs
- - -
Harry Bingham is the author of The Sons Of Adam (HarperCollins. £6.99 - see Express Bookshop, page 66). For more information contact Action for ME (01749 670799: www. afme. org. uk )
Chyna posted this at a forum on Myalgic Encephalomyelitis:
http://www.fazed.com/phpBB/viewtopic.php?topic=3669&forum=4&0
Also, Fay posted the same article at another forum:
http://brain.hastypastry.net/forums/showpost.php?p=246985&postcount=1
http://brain.hastypastry.net/forums/showthread.php?t=29783
Here's what Fay wrote: "Finally, ALREADY, it's happened! National newpaper coverage on the link between CFS (m.e., and that includes Fibro) and LYME DISEASE. I cannot believe I've read this in a national newspaper. It's fantastic. See, I'm not just a lone raving lunatic! This ALSO APPLIES to people with symptoms of CFS or Fibro (or M.S. and other neuro diseases) who do not have a CFS diagnosis. Anyway, the article is pasted in two parts below:
Also, Fay wrote: "I am very pleased that this is already getting national media attention. As some here may know, I had a CFS diagnosis for over 14 years when it turned out that what I in fact had is CHRONIC LYME DISEASE. I'm now being treated - similarly to the person in the article."
posted by Ingrid J. Jones at Saturday, August 28, 2004
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