Lois Owen in Derby, 2001 with her father, Roger
I'm very sorry to hear about the death of this kind-hearted 34-year-old woman who had so much potential to offer. This may seem an incredulous story to those who haven't experienced the ravages of very severe ME/CFS, but I fully understand why she couldn't go to hospital (which I'm guessing is the only place a feeing tube could've been inserted). When you are at this level of functioning, you have absolutely nothing to spare for the clamouring, invasive, demanding nature of hospitals. You can't stand even the trip via ambulance, let alone the treatment you get once you've been admitted. So, you choose the place you know for sure wont kill you - your home. Sadly, even refraining from hospitalization was not enough to save Lois' life. Sincere condolences to her family on the loss of their beautiful daughter.
via Derby Telegraph
Monday, february 27, 2012
"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."
Lovingkindness Practice: Cultivate goodwill and benevolence toward all beings, including yourself.
Published on February 17, 2012 by Toni Bernhard, J.D. in Turning Straw Into GoldToni is a Buddhist practitioner and person living with ME/CFS. She is the author of 'How To Be Sick'. Meditation and other Buddhist practices can assist us in being with whatever arises, instead of spending energy on trying to push undesirable states away. Remembering that all healing begins with acknowledging the truth, practices such as mindfulness meditation, scanning the body and metta/loving-kindness meditation can do a lot to help us on our healing journey.Read Toni's entire piece on how to practice loving-kindness towards yourself here:
"This paper summarizes research on genes that may be linked to increased susceptibility in developing and maintaining these disorders, and research on resting and stressor-evoked changes in leukocyte gene expression, highlighting physiological pathways linked to stress and distress. These include the adrenergic nervous system, the hypothalamic-pituitary-adrenal axis and serotonergic pathways, and exercise responsive metabolite-detecting ion channels. The findings to date provide some support for both inherited susceptibility and/or physiological dysregulation in all three systems, particularly for catechol-O-methyl transferase (COMT) genes, the glucocorticoid and the related mineralocorticoid receptors (NR3C1, NR3C2), and the purinergic 2X4 (P2X4) ion channel involved as a sensory receptor for muscle pain and fatigue and also in upregulation of spinal microglia in chronic pain models. Methodological concerns for future research, including potential influences of comorbid clinical depression and antidepressants and other medications, on gene expression are also addressed."
Orthostatic Intolerance and Chronic Fatigue Syndrome ProHealth.com by David S Bell, ME, FAAP February 8, 2012 This information was first published in the May 2000 issue of the Lyndonville Journal - a bi-monthly newsletter from Dr. Bell's medical office that preceded the Lyndonville News (DavidSBell.com). It is reproduced here with kind permission,* and offers basic information on a subject of great current interest, with researchers at various centers(1) working to unravel the link between orthostatic dysfunction and ME/CFS.
Orthostatic Intolerance and Chronic Fatigue Syndrome (ME/CFS)
“In many medical illnesses, the patient will feel ill regardless of whether he or she is lying down or standing up. With CFS, patients will say, ‘"I feel so exhausted I have to lie down.’”
Orthostatic intolerance (OI) is a term used for illnesses which are characterized by inability to maintain the upright posture. It is a group of illnesses that overlaps with CFS just as fibromyalgia does, and it may give up leads as to the underlying pathology of the illness. The most exciting new leads are happening in the world of orthostatic intolerance.
Because much of the literature on OI may be unfamiliar to the reader, I will try to summarize it. For those interested in more in-depth reading, I would start with “The Epidemic of Orthostatic Tachycardia and Orthostatic Intolerance.” The February 1999 issue of the American Journal of the Medical Sciences. This issue [unfortunately fee based] is devoted to a review of OI, and much of what I will say here is taken from that issue.
Defined simply, OI is the presence of symptoms due to inadequate cerebral perfusion [blood flow to the brain] on assuming the upright posture. The usual symptoms include fatigue, nausea, lightheadedness, heart palpitations, sweating, and sometimes passing out.
Many persons with medically proven OI have been assumed to have emotional problems when they don’t.
Like CFS, there have been many terms in the past to describe this group of disorders, including “asthenia.” Sound familiar? It is not known what is the exact relationship between OI and CFS, and up until recently studies in the two areas have followed separate tracks.
The one very nice advantage OI has over CFS is that it can be proven and there are well defined subgroups.
Over the past year in our office we have been testing patients with CFS for OI by two methods. • One has been a circulating blood volume study [low blood volume is common in ME/CFS], • And the second is a test for orthostatic intolerance. This test is easily done in the office and requires only a blood pressure cuff and a good nurse to catch the patient before passing out. The test is relatively simple. • The patient lies comfortably for ten minutes and BP and pulse are taken several times. • Then the patient stands quietly (no moving around) with the blood pressure cuff on, and BP and pulse are taken every few minutes. This is a poor man’s tilt test [tilt test video], and I would argue that it is more accurate because it reproduces exactly what happens to a patient waiting in the checkout line at the supermarket. [For detail, see sidebar on "Orthostatic Testing Procedure."]
A person with CFS nearly always has orthostatic intolerance.
They describe the symptom of fatigue (which is not fatigue at all), which is characterized by being relatively OK while walking down the aisle of the supermarket, but being unable to stand in the checkout line. The orthostatic testing describes physiologically why this occurs.
There are five separate abnormalities than can occur during quiet standing:
1. Orthostatic Systolic Hypotension
Where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20mmHg on standing up.
One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up – a blood pressure that low is really unable to circulate blood to the brain. In any ICU they would panic seeing a BP like that. And she was turned down for disability because she probably was a hypochondriac.
2. POTS - Stands for Postural Orthostatic Tachycardia Syndrome
A healthy person will not change their heart rate standing up for an hour.
In a person with POTS, this heart rate increases 26 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS.
I think the increase in heart rate is linked to the decrease in blood volume. Orthostatic intolerance has been called idiopathic hypovolemia [low blood volume] in the past.)
3. Orthostatic Narrowing of the Pulse Pressure
The pulse pressure is the difference between the upper number of the BP and the lower number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40.
It is actually the difference between the upper (systolic, maximum pressure) and lower number (diastolic, minimum pressure) of the BP that circulates blood. • If the pulse pressure drops below 18, it is abnormal, and blood would not circulate in the brain well. • We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. • The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out. 4. Orthostatic Diastolic Hypertension
The lower number of the BP often reflects the systemic resistance, and while standing, many persons with OI and CFS will raise their lower BP number in [the body's] attempt to push blood up to the brain.
Sometimes this is dramatic. One patient being followed with CFS has a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself.
As an aside, everyone thought he was a fruitcake – a healthy looking man who said he felt poorly and couldn’t work. He was denied disability as usual. Yet when we did the test, he was so determined to stand up I was afraid… But he was standing with a BP of 210/140 and a pulse of 140 bpm. He is definitely not a wimp.
After the test, we gave him a liter of saline in the office because he didn’t look too good and his blood pressure fell to 90/80 after an hour or so.
It is important to note that we had measured his volume the day before so we knew he was hypovolemic [had low blood volume]. Normally you would never give saline to someone with high blood pressure, it just makes it go higher. In the future, orthostatic testing will require being done in an intensive care unit because these number are so scary.
Now it is ignored, and patients with CFS called fruitcakes!
5. Orthostatic Diastolic Hypotension
This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.
[To learn more, read "Maggie's Panic" - Dr. Bell's intriguing case study of a CFS and fibromyalgia patient whose 'strange symptoms' were finally diagnosed as orthostatic intolerance and low blood volume.]
Below is a listing of these BP abnormalities and normal values, taken from Dr. David Streeten’s book Orthostatic Disorders of the Circulation.... These are important as they will directly measure treatment responses with something other than symptom improvement.
NORMAL systolic blood pressure (sBP) - upper number:
Standing (4 min): 94-141;
Orthostatic change -19 to +11
NORMAL diastolic blood pressure (dBP) - lower number:
Orthostatic change: -9 to +22
Orthostatic Systolic Hypotension:
Fall in systolic blood pressure of 20mmHg or more
Orthostatic Diastolic Hypertension:
Fall in diastolic BP of 10 mmHg or more
Orthostatic Diastolic Hypertension:
Rise in diastolic BP to 98 mmHg or higher
Orthostatic Narrowing of Pulse Pressure:
Fall in pulse pressure to 18 mmHg or lower
Orthostatic Postural Tachycardia:
Increase in heart rate of 28 bpm, or to greater than 110 b/min
Jean Pollard, Dr. Bell's office manager, adds:
In our office we see a number of patients for assessment of disability..... [One part of such an evaluation is a Summary of Laboratory Evaluation.] Supportive laboratory evaluation such as orthostatic testing, circulating blood volume or immunologic status should be reported along with negative studies. Supportive laboratory evaluation should be referenced to show that it has been noted to occur in CFS. For example:
Orthostatic testing revealed orthostatic tachycardia with an elevation of pulse on quiet standing of 47 beats per minute.(1,2) (1) DeLorenzo F, Hargreaves J, Kakkar VV. Possible relationship between Chronic Fatigue Syndrome and postural tachcardia syndromes. Clin Auton Res 1996 6(5);263-4 (2) Jacob G, Biaggioni I. Idiopathic orthostatic intolerance and postural tachycardia syndrome. Am J Med Sci 1999; 317:88-101. ____________________________________ Orthostatic Testing Procedure
- David S Bell A number of people have requested the procedure for orthostatic testing that we perform in the office. It takes about 45 minutes and requires a nurse to be constantly present. It is important to note that this test is difficult for some persons with CFS, and an opportunity to rest for an hour after the testing is offered. Intravenous saline is helpful to aid recovery.
1. Patients should be tested late morning or early afternoon with no unusual activity prior to testing. Large meals and large volumes of fluid prior to testing should be avoided.
2. Normal medications should be taken the day of the test. Medications which affect circulating volume should be stopped at least two weeks prior to testing, as they will affect the results. Examples are Florinef, diuretics, blood pressure medications, large salt loads. Tricyclics and SSRI medications are acceptable if not for research studies.
3. Blood pressure should be taken with manual blood pressure cuff every three to five minutes, along with pulse. If available, a dynamap or other accurate BP device can be used.
4. Step 1. Patient lying down comfortably for 10 minutes. Pulse and BP are recorded at onset, 5 minutes and 10 minutes. Pulse and BP are recorded at onset, 5 minutes and 10 minutes, along with recording of observations of spontaneously reported symptoms.
5. Step 2. Patient stands without moving or leaning on any object for 30 minutes or as long as tolerated. If patient pre-syncopal (feeling about to faint), the test is terminated. Right arm is resting on table at mid chest (heart) level with BP cuff in place. Pulse and BP are taken every 5 minutes, and spontaneous symptoms recorded as well as observations (e.g., yawning, feet mottled or bluish, etc). If symptoms become more severe, pulse and BP are taken every 3 minutes.
In recording results, use the listing of normal values and abnormalities per Dr. David Streeten, provided above.
* Reproduced with kind permission of the author from the paper archives of the Lyndonville Journal, © Bell, Pollard, Robinson, 2000. All rights reserved.
1. Other Resources. For recent research reports, see also:
• "Pulse abnormalities at rest and during tilt test could be highly indicative screen for ME/CFS" - Newcastle University
• "Fibromyalgia-like pain as a cause of autonomic dysregulation," (animal study data "corroborate findings in humans with FM.) - University of Iowa.
• "Postural Orthostatic Tachycardia Syndrome following Lyme Disease" - University of Toledo Medical Center
• "Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: Implications for management," - Newcastle University
• "Orthostatic Stress Impairs Cognitive Function in CFS with POTS," - New York Medical College
• "Blood pressure testing should routinely check for orthostatic hypotension too, researchers advise," - Rosalind Franklin University of Medicine & Science, Chicago
Note: This information has not been evaluated by the FDA. It represents the personal research and opinions of the authors, is for general informational purposes only, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. ME/CFS/FM is an extremely complex illness, and advice in a newsletter may not be appropriate for a specific individual. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.
In part three of the CBC radio series 'ReCivilization', Don examines the future of health care and medicine, where patients become co-managers of their own wellness, and use the web to network with each other for support, knowledge, and healing - outside the old, institutional, medical framework.Listen to the program here:http://www.cbc.ca/recivilization/episode/2012/02/05/episode-three-collaborative-health-care/
Electron Microscopy Shows Abnormal Mitochondria in ME
January 31, 2012
Here's a 6-minute video of Professor Peter Behan on BBC ALBA. “Electron microscopy shows abnormal mitochondria in Myalgic Encephalomyelitis, and we have known this since the 1980s. Research money should be spent on biomedical Myalgic Encephalomyelitis research and not on psycho nonsense,” says Dr. Behan, a retired Harvard trained neurologist and psychologist who became a world expert on the physiological nature of ME/CFS through his practice at Southern General Hospital in Glasgow.
Oxidative Stress in Chronic Fatigue Syndrome
By Adrienne Dellwo, About.com Guide February 2, 2012
Note: About.com writer Adrienne Dwello breaks down "Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology" which was posted on co-cure a week or so ago and she includes treatment information targeting oxidative stress.
A new study supports the theory that chronic fatigue syndrome(ME/CFS) may be related to oxidative stress, and that oxidative stress may play a key causative role in the illness.
This was the third study in a series looking at several possible components of ME/CFS:
The earlier research had uncovered significantly elevated levels of ventricular cerebrospinal-fluid lactate in ME/CFS, as compared to generalized anxiety disorder and healthy controls. In this study, researchers wanted to see if the high lactate levels could be caused by increased oxidative stress, low blood flow to the brain, and/or mitochondrial dysfunction (which involves the building blocks of cells.)
They say results showed significantly high ventricular lactate in participants with ME/CFS compared to healthy controls. They also report an insignificant difference in measures of cortical glutathione and no difference in markers of mitochondrial function.
In addition, ventricular lactate was highest and cortical glutathione was lowest in the most severe cases.
Researchers concluded that this study supports the pathphysiological model of ME/CFS with oxidative stress as a possible underlying cause.
Read the full article as well as a link to Dr. Martin Pall's protocol