Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat
"SIX words and she would be exhausted."
That was how Roger Owen explained his daughter's reluctance to be visited by doctors.
"She just couldn't cope with any more information than that," he said. "Even her lunch took four hours to eat because chewing used up energy."
University graduate Lois Owen, 34, died after her weight plummeted to just 3st 2lbs (20kg), leaving her exhausted and barely able to move.
She had battled for years with chronic fatigue syndrome and medics said she also had anorexia.
Neither Mr Owen or his wife could face sitting through the inquest held into her death. Mr Owen attended only to give evidence.
He told the hearing that those involved in Lois's care were "powerless" as everything they tried – from home visits to admitting her to hospital – made her condition worse.
Even Lois's GP said the best course of action was to allow her to remain bed-bound, at home with a team of carers.
Chronic fatigue syndrome is a disorder that affects one in 250,000 people in the UK and results in extreme tiredness. The cause is not known and there is no cure, although most people improve or recover over time.
But when Lois got a chest infection in March 2009, she was too weak to fight it off and she died.
At her inquest, held at Derby Coroner's Court, deputy coroner Louise Pinder ruled nothing could have been done differently to save Lois's life.
A post mortem examination showed she weighed 3st 2lbs when she died and her organs had shrunk due to "poor" nourishment.
Mr Owen said Lois's loss of appetite was caused by a lack of energy, but medics said she had anorexia.
And consultant pathologist Dr David Semeraro said cachexia, meaning a weakened body, had left Lois unable to fight a chest infection that led to her lungs failing.
Medics told the inquest they felt "powerless" as Lois, of Crosby Street, Derby, refused to be seen on a regular basis and wanted to be alone when she ate or drank.
GP Dr Ruth Lenehan said admitting her to hospital was "not in her best interests" as her physical condition "deteriorated" when she was taken from her bed.
Lois's health problems began when she was diagnosed with epilepsy at the age of 12 or 13, although medication meant it rarely impacted on her life. A year later, she was diagnosed with chronic fatigue syndrome.
Mr Owen told the inquest the condition was identified after his daughter came home from school feeling tired.
He said: "She was complaining of leg aches after walking two miles uphill to school. We didn't take too much notice at first but then it was getting worse.
"She was going to bed before 10pm. It meant her social life was quite limited."
Mr Owen said her daughter's condition "fluctuated" and she had been well enough to enrol at the University of Derby. Fatigue crept back into her life but she managed to complete her course.
She chose to remain in Derby after graduating in 2001 and set up a charity called Therapeutic Arts, which aimed to help people by providing free classes in painting, drama, poetry, sculpture and music.
But, a year after setting up the business, she suffered a relapse of her chronic fatigue syndrome and was largely bed-bound until 2004.
Dr Lenehan told the inquest Lois was sectioned under the Mental Health Act in July of that same year after "throwing" herself out of a window, leaving her badly injured with fractures.
Mr Owen said his daughter told him she had begun "hearing voices" and that she later blamed it on dehydration.
With anti-psychotic medication, consultant psychiatrist Dr Subodh Dave told the hearing that she "progressed well", put on weight and was discharged from hospital as an outpatient in October 2005, allowing her to return to work. She was discharged from Derbyshire Mental Health Trust completely in March 2006.
But another chronic fatigue relapse towards the end of 2006 led to her again being bed-bound. She never recovered.
Mr Owen said he and his wife, who live in Bradford, did not believe their daughter was ever clinically anorexic.
He said: "We took her out in 2005 for a meal, near Christmas, and she surprised us by deciding to have a steak. She enjoyed her food.
"We feel she never had a problem with food except for when she was unwell. When she didn't want to eat she said it was because she didn't have the energy."
Mr Owen said Lois believed she would get better.
He said: "She could not communicate orally for the last two-and-a-half years of her life. But she left bits of writing and in them she wrote her plans for her business and a list of five books she wanted to write.
"By her bedside there was a five-year plan, starting in 2009, of things she hoped to achieve. They were to do with her home, her business and her writing."
Dr Lenehan said she never saw Lois out of bed because she was too "frail and thin".
She said Lois did not allow her to visit frequently.
Asked about the last time she saw Lois – four days before her death – she said: "She appeared thinner than when I had seen her previously. I was able to communicate with her via hand gestures and writing. We discussed admitting her to hospital but she felt that would make her condition worse."
Dr Lenehan said she and Lois's team of carers had done all they could to help her.
Christopher Ward, professor of rehabilitation medicine at the University of Nottingham, agreed with Dr Lenehan, adding "there was a sense of powerlessness" among her carers.
A team from Derbyshire Care Services visited three times a day to prepare food and clean. Care co-ordinator Charlotte Wilson said a care plan – agreed by Ms Owen and her family – was followed.
Deputy coroner Louise Pinder recorded a narrative verdict.
She said Lois had received "appropriate care" in the circumstances and ruled she had not been neglected, accepting Ms Owen "remained in control of, and was responsible for, all decisions relating to her care".
Lois wrote book about condition to help others
Lois Owen's love of writing and helping others is what led her to pen a book on tackling chronic fatigue syndrome.
Now her father, Roger Owen, has had it published in his daughter's memory – and says that a chronic fatigue charity has expressed an interest in selling the book.
Lois wrote chapters in her stronger years, Mr Owen said.
The book, Bed Without Boundaries, details her own battle with the syndrome and suggests therapeutic activities to help other sufferers.
Mr Owen said: "She finished it in 2003 and it's based on her experiences of chronic fatigue syndrome up to that point, such as being bed-bound as a teenager and her relapses.
"After she was better for a while, in 2004, she managed to update it. It was her dream to have a book published. When she died, I edited and illustrated it."
Mr Owen said Lois had started writing four other books but never finished them due to poor health.
He said she was a talented writer and that he and his wife had kept 100 of her poems. "It's one way of remembering Lois," he said.
The former University of Derby student was among only a few people on her combined psychology, healing arts and drama course that graduated with a first-class degree in 2001.
From then, she and a friend set up a charity. It offered free sessions in painting, drama, poetry, sculpture and music.
Its aims were to help users express themselves and improve their learning. It folded in 2007 because Lois was too unwell to help run it.
Mr Owen said helping others mattered dearly to Lois.
He said: "Her friends told me of a time when they got off a train and looked back to see her talking to a homeless person sat on the floor. Everyone else had walked by. She had a heart for the underprivileged. It's ironic she tried to help people but that no-one, in the end, could help her."
18 Comments
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by renethorpe
Friday, March 02 2012, 11:55AM
“Tuesday, February 28 2012, 11:29AM
"Lois didn't have Anorexia. She had ME or a similar Illness. I have had ME now for 24 years no help from social services or Hospital.They had evicted me I was ill according to them because I had not had a baby. My husband had to prop me up and spoon feed me. I loved food but couldn't eat I spent 23 hrs a day laying on a bed feeling poisoned and having difficulty swallowing. how can you eat feeling and being so physically affected like that. yes malnutrition would be the result as with Anorexia but she could have been helped. The Science Media centre ask certain Psychiatrists for their advise when reporting on ME and similar illnesses. this way they can keep the reality and severity of the illness away from the public. It suits the government to portray it this was as it makes it harder to claim benefits.they would rather send out a message that we are scroungers. we so need public help to change this kind of treatment of severely sick people. we cannot do it on our own."”
by icon4
Wednesday, February 29 2012, 3:48PM
“Another tragic story about ME. So sad and I send all sympathy to Lois poor family.
I have had ME for 32 years, and receive no treatment or help of any kind, even though I am housebound. I was thought to have anorexia when I was so ill I could not eat and consequently lost a great deal of weight. I was not anorexic and never have been. I simply could not eat, due to ME, and required appropriate medical help. Why are the general public so willing to sit back and let this travesty continue? It could be you or one of your children; no one is immune to this. I had a good degree and a fufilling career ahead of me when I became ill, and did not choose to live like this.”
by MaryMS
Wednesday, February 29 2012, 12:30AM
“The worst part of this story is that it was preventable.
Clearly this woman had M.E. (myalgic encephalomyelitis) - not anorexia and chronic fatigue.
It is unusual, but the sickest patients do lose the ability to swallow - not because they are "too tired," but because the muscles won't work. That is what happened to Sophia Mirza when she died in 2005, also served poorly by the medical community.
I have better luck. I live in the United States, and have been fortunate to have been in a number of studies, which demonstrated I have immune defects and am beset with opportunistic and re-activated viruses, in my spinal fluid as well as my blood. I've never been completely well since blacking out in my office in 1994. But with my husband's salary and my own disability, I've been able to afford an experimental immune modulator. It's a lot of money, but I clearly had a progressive form of the disease. I was at the point where I was almost entirely bedridden; I was able to make it to the bathroom and back to bed with help. But I could not even brush my own teeth. I had to lie in a darkened room because light was too painful, tho I was able to listen to movies on tv - just couldn't watch them.
We know that there are one million patients with M.E. in the United States - the problem is, it's not diagnosed. So those who are diagnosed have a diagnosis of CFS, and many people with a diagnosis of CFS do not have M.E. The upshot is that there are at least 850,000 adults - and perhaps 50,000 children and teenagers - who have no idea why they are sick.
That is why this story is so important. My heart breaks for her parents, but I am grateful they have shared this story with the public. Young Lois Owen needed a doctor who knew what was wrong with her.
My own doctor, Derek Enlander of NYC, will be joining others speaking about M.E. in a committee meeting at the House of Lords this week. Perhaps somebody should listen to what they say. There is no excuse in this day and age to allow so much suffering.”
by MakeAStand
Tuesday, February 28 2012, 4:08PM
“HOW DO YOU KNOW HOW IT FEELS TO BE ME?
by Simon Icke UK
How do you know how it feels to be me?
There's a lot more to me than what you see.
Have you felt the same hurts and pain?
We've lived different lives, we are not the same.
I'm simply trying to rebuild
a life worth having; in this hard world.
I'm surviving the trials of everyday living.
Oh why can you not be more forgiving?
Your careless hard words, if only you knew,
how they cut me through and through;
even though I make no judgement on you.
I wonder if you realise,
just how much you offend,
with your cruel words; that you sometimes send.
I would just love to be well, like you my friend;
I really hope that I'm on the mend.
And that my painful journey is near its end.
In memory of Lois Owen R.I.P
Simon Icke
Buckinghamshire UK
Author of Message in the Ryme a journey with M.E on M.E support website. I hope this poem helps people have more empathy with M.E. sufferers.”
by MakeAStand
Tuesday, February 28 2012, 4:01PM
“Check out out M.E.Support created by M.E sufferer Louise; a very helpful website full of useful and encouraging information.”
by MakeAStand
Tuesday, February 28 2012, 3:56PM
“I recommend this website for M.E sufferers and their friends and family to help them understand this debilitating illness first hand from other people who have M.E; people know what it is to struggle everyday with the symptoms of this often mis-undestood chronic illness. My thanks go to Louise the creator and editor of this excellent website: http://tinyurl.com/yhekmrj
Best Regards
Author of: Message in the Rhyme
Simon Icke”
by juliacottam
Tuesday, February 28 2012, 12:32AM
“I forget to mention in my previous post that your over optimistic appraisal of the prognosis of this condition is also wrong. The majority of those that develop ME, around 80%, do not fully recover and many sufferers have their lives blighted for many years by this condition. I have now had ME for 15 years and whilst I have 'improved,' this currently means I am now able to leave the house for a couple of hours once a week. Hardly what most healthy people would consider a good qualify of life. Whilst I applaud you for covering a story about ME, it would be nice to see less misinformation about ME since it does little to raise proper public awareness about the true nature of this condition.”
by cfsboston
Monday, February 27 2012, 9:11PM
“Do I have CFS, ME, or AIDS? Or are they all the same?
The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it's no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.
How can the AIDS establishment continue with a stale "it's caused by HIV" theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money. How can it make sense to anyone?
In the U.S. last year, the NIH spent $3.1 Billion this year drugging perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFS patients received a meager $6 Million. How can it make sense to you? source: http://tinyurl.com/2bv368t
It's so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's already well-documented that HIV is not the cause of CFS/ME.
How else do you explain why there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) better on ARV's, and/or 3) severely immunosuppressed (AIDS)...
...is a CFS patient.
Putting causal pathogens aside (for a minute), simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and only diagnosis patients with "low NK cells" with it. Everyone would clearly see that:
CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic *
* not caused by HIV
Allied government sold-out global public health for sake of profit --- industry, oil, and Orwellian greed. If I weren't only 25% alive, I often wonder if I should 'Occupy' the White House.
Now that the mystery has been solved, could we please stop wasting time and re-allocate ALL HIV funding into ME research?
I demand a revolution! Vive La Revolución.
http://tinyurl.com/c4gcdc3”
by juliacottam
Monday, February 27 2012, 7:08PM
“Your article states that 1 in 250,000 have ME in the UK. In fact this should be 1 in 250, which equates to 250,000 sufferers in the UK, 25% of whom are either house or bedbound. This condition is 4 times more common than MS and the leading cause of long term sickness in schoolchildren. Currently there is no cure and nearly all biomedical research is privately funded. It's time we all woke up to this illness and give it the recognition it deserves.”
by DrJohnMeComm
Monday, February 27 2012, 6:02PM
“Although the term Myalgic Encephalomyelitis does not appear anywhere in the pitiful story about Lois Owen, many people affected by M.E., whether sufferers, carers, doctors, or researchers, will be presuming that this is what Lois had. This is because, since 1988, when Chronic Fatigue Syndrome was created and especially since the NICE guidelines of 2007, doctors have been told that they should regard M.E. as the same as CFS and prefer the latter term. Some patients have even had the diagnosis on their notes changed from M.E. to the less discriminatory CFS. There are, however, some symptoms that Lois had which many with M.E. do not have and some cardinal symptoms of the M.E. sufferer that are missing from Lois's account.
The crucial importance of distinguishing M.E. from CFS is demonstrated by showing that, if treatments which may be suitable for some patients with a particular chronic fatigue illness are given to M.E. patients, they are ineffective or make some worse. It is too late for poor Lois but there are many more suffering today, not getting a sufficiently accurate diagnosis, which may help and even save some lives.”