Saturday, 14 January 2017
Written By Jamison Hill
For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”
I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.
The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.
Similar theoretical concepts like somatoform disorder suggest that the body can only cope with a finite amount of mental factors before physical symptoms, like headaches, begin to show. But there is a substantial difference between an acute problem like a stress-related headache and claiming that a serious chronic illness is psychosomatic. With the exception of chronic migraines, a headache is generally considered to be an acute symptom, not a chronic illness.
The theory of psychosomatic illness is flawed. Many serious illnesses are initially tagged as psychosomatic because they are too complex for doctors to offer a singular explanation or because the patients have no physical symptoms. There may be a connection between the body and mind—the brain is, after all, an anatomical feature of the body—but this does not mean that physiological diseases can be manifested through mental factors. For example, a 2007 commentary published in the Journal of the American Medical Association concluded that while stress can be a factor in some diseases, “a causal relationship” could not be found.
Dr. Dale Peterson, former president of the Oklahoma Academy of Family Physicians, is even more adamant that physiological disease cannot be caused by mental factors. “Psychological and sociological dynamics may predispose an individual to illness or cause an illness to be much more severe, but other factors must be present to trigger the condition,” he says.
The idea that a disease can be generated from the mind not only lacks scientific evidence—it is belittling to those who suffer from physical illnesses. As Dr. Peterson explains, for someone in the medical field to say a physiological illness is psychosomatic is merely “a professional way of saying I don’t have a clue!”
I contracted myalgic encephalomyelitis after a bad case of mononucleosis in 2010 (an illness often jokingly referred to as the “kissing bug”). Within the first year, my condition had deteriorated to the point where I could no longer take care of myself; I had become bedridden, and eventually lost my ability to speak, eat, tolerate light, or lift my head off the pillow. Through a daily regimen of oral anti-viral medication and IV treatments, my health eventually started to improve. I can now speak polysyllabic words, chew soft food, and sit up in bed to see the sunlight streaming across my room.
But these improvements have had nothing to do with changes in my mental state; I did not will them to happen. Instead, my body was given the proper medicine to improve its physiological impairment.
Regardless, many doctors still disregard my ailments as some form of psychosomatic illness. But sometimes technology just isn’t advanced enough in order to reveal the true underlying physical symptoms behind a disease. For example, until the invention of the MRI in the 1970s, multiple sclerosis was believed to be a form of “hysterical paralysis.” Likewise, some forms of autism, particularly in children, were once thought by some psychologists to be due to a lack of maternal nurturing. Similarly, until inflammation could be measured, asthma was also commonly blamed on overbearing mothers. We all now know that these three diseases have true, physiological causes—not mental ones.
While these illnesses have largely overcome psychogenic theories, other physiological illnesses still face similar stigmas: Inflammatory conditions like Crohn’s disease, stomach ulcers, and irritable bowel syndrome (IBS) still carry psychosomatic overtones—usually stress-related—even though they have been proven to have physiological origins. Researchers at the University of Edinburgh, for instance, have compiled an overview of studies that link Crohn’s disease to factors such as genetics, immune function, and gut bacteria, not psychogenesis.
A lot of this misinformation has spread widely throughout popular culture despite being proven scientifically unsound. For example, a study published in 2011 in the Lancet, a prestigious UK medical journal, used psychosomatic theory to claim that cognitive behavioral therapy (CBT) substantially benefited people with myalgic encephalomyelitis. The study, known as the PACE trial, was eventually debunked and proved to be the product of bad science—but not before it had influenced public-health services to adopt treatment models, many of which actively harmed patients by prescribing exercise to severely ill patients based on psychogenic models.
There is hope, however. After all, multiple sclerosis and autism have managed to transcend the stigma of outmoded psychosomatic theory. But until the government and medical establishment realizes that psychosomatic theory has no place in modern medicine, diseases like mine will continue to be stigmatized, trivialized, and dismissed.
Wednesday, 4 January 2017
Haukeland Team to Visit UK for Rituximab Trial Planning and Public Talks
Dr. Øystein Fluge and Dr. Ingrid Rekeland from Department of Oncology and Medical Physics Haukeland University Hospital, Bergen, Norway, will be joining Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia, for an event being held at The Assembly House in Norwich on 26th January, from 6.30pm to 9pm.
The meeting is open to the public and and the talks will be CPD-accredited.
Admission is free and places may be reserved by contacting Invest in ME Research by using the contact form on their website, or by emailing the charity at firstname.lastname@example.org with subject title Dr Øystein Fluge Public Talk.
The public meeting will be a great opportunity for awareness of ground-breaking biomedical research into ME (Myalgic Encephalomyelitis) of the highest quality.
However, the main purpose of the visit by Dr. Fluge and his team is to discuss the UK clinical trial of rituximab as a treatment for ME, planned to be conducted in Norwich, the hub of the Invest in ME Research Centre of Excellence for ME. From an article on IFR News and Events –
Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway will be talking about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms. Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.
Dr Fluge is visiting Norwich to collaborate over another Rituximab trial being carried out on the Norwich Research Park. Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia will also be talking about at the event about this, as well as research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.
Read in full at
Monday, 2 January 2017
A Very Happy New Year to readers of my blog, your families and friends.
C H Spurgeon’s morning devotional for 2nd January –
"Continue in prayer."
It is interesting to remark how large a portion of Sacred Writ is occupied with the subject of prayer, either in furnishing examples, enforcing precepts, or pronouncing promises. We scarcely open the Bible before we read, "Then began men to call upon the name of the Lord;" and just as we are about to close the volume, the "Amen" of an earnest supplication meets our ear. Instances are plentiful. Here we find a wrestling Jacob-there a Daniel who prayed three times a day-and a David who with all his heart called upon his God. On the mountain we see Elias; in the dungeon Paul and Silas. We have multitudes of commands, and myriads of promises. What does this teach us, but the sacred importance and necessity of prayer? We may be certain that whatever God has made prominent in His Word, He intended to be conspicuous in our lives. If He has said much about prayer, it is because He knows we have much need of it. So deep are our necessities, that until we are in heaven we must not cease to pray. Dost thou want nothing? Then, I fear thou dost not know thy poverty. Hast thou no mercy to ask of God? Then, may the Lord's mercy show thee thy misery! A prayerless soul is a Christless soul. Prayer is the lisping of the believing infant, the shout of the fighting believer, the requiem of the dying saint falling asleep in Jesus. It is the breath, the watchword, the comfort, the strength, the honour of a Christian. If thou be a child of God, thou wilt seek thy Father's face, and live in thy Father's love. Pray that this year thou mayst be holy, humble, zealous, and patient; have closer communion with Christ, and enter oftener into the banqueting-house of His love. Pray that thou mayst be an example and a blessing unto others, and that thou mayst live more to the glory of thy Master. The motto for this year must be, "Continue in prayer."
Saturday, 24 December 2016
A Very Happy Christmas to readers of my blog, your families and friends.
From the Bible –
Matthew 1 v 18 – 25: Now the birth of Jesus Christ was on this wise: When as His mother Mary was espoused to Joseph, before they came together, she was found with child of the Holy Ghost. Then Joseph her husband, being a just man, and not willing to make her a publick example, was minded to put her away privily. But while he thought on these things, behold, the angel of the Lord appeared unto him in a dream, saying, Joseph, thou son of David, fear not to take unto thee Mary thy wife: for that which is conceived in her is of the Holy Ghost. And she shall bring forth a Son, and thou shalt call His name JESUS: for He shall save His people from their sins. Now all this was done, that it might be fulfilled which was spoken of the Lord by the prophet, saying, Behold, a virgin shall be with Child, and shall bring forth a Son, and they shall call His name Emmanuel, which being interpreted is, God with us. Then Joseph being raised from sleep did as the angel of the Lord had bidden him, and took unto him his wife: And knew her not till she had brought forth her firstborn Son: and he called His name JESUS.
Mum’s Christmas Poem 2016 –
From Heaven’s Glory
Dwelling in heav’ns glory
In perfect harmony,
Father, Son and Spirit,
Leaving heaven’s glory,
As Man, coming to earth:
This the oft told story
Of Christ the Saviour’s birth.
Children sing of Mary,
And Child in manger laid,
Of wise men bringing gifts,
Of Herod much dismayed.
There lies behind this scene
The love of God for man;
The grace of God’s own Son;
Salvation’s costly plan.
The Father loved and gave,
The Saviour loved and came,
Not for a worthy race,
But rebels to reclaim.
This Child was born to die,
Freely His life to give,
That sinners such as I,
Might look to Him and live.
So on that cross of shame,
Thorn-crowned, the Saviour bore
Our sin, that we might know
True life for evermore.
© JHS Dec 2016
I recently came across the following about Christmas by J C Ryle back in 1878 –
“For example, Christmas is peculiarly a time when English people "gather together." It is the season when family meetings have become almost a national institution. In town and in country, among rich and among poor, from the palace to the workhouse — Christmas cheer and Christmas gatherings are proverbial things. It is the one time in the year with many, for seeing their friends at all. Sons snatch a few days from London business to run down and see their parents; brothers get leave of absence from the desk to spend a week with their sisters; friends accept long-standing invitations, and contrive to pay a visit to their friends; boys rush home from school, and glory in the warmth and comfort of the old house. Business for a little space comes to a standstill — the weary wheels of incessant labour seem almost to cease revolving for a few hours. In short, there is a general spirit of "gathering together."
Happy is the land where such a state of things exists! Long may it last in England, and never may it end! Poor and shallow is that philosophy which sneers at Christmas gatherings. Cold and hard is that religion which pretends to frown at them, and denounces them as wicked. Family affection lies at the very roots of well-ordered society. It is one of the few good things which have survived the fall, and prevent men and women from being mere devils! It is the secret oil on the wheels of our social system which keeps the whole machine going, and without which neither steam nor fire would avail. Anything which helps to keep up family affection and brotherly love is a positive good to a country. May the Christmas day never arrive in England when there are no family meetings and no gatherings together!”
Tuesday, 20 December 2016
Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?
Naomi Whittingham, 19 December 2016
We need to draw attention not only to the illness itself, but the political neglect that allows it to continue destroying lives.
I live in a world largely hidden from view. Most of my neighbours do not even know that I exist. I was last seen as a child walking home from school 26 years ago. In the decades since, I have rarely left my house; when I do, it is in a wheelchair.
Myalgic encephalomyelitis (ME) struck suddenly for me, with a viral infection, although for some the onset is more insidious.
Within a few months, it had stripped me of the ability to walk or talk, to move my arms or to open my eyes. It entombed me in such agonising pain that life was reduced to the drawing of each breath. My family and doctor expected me to die at any time. I survived, but for years it was a living death. I was too ill to tolerate any stimulation, and knew nothing but pain and complete darkness.
My personal experiences have moved me to campaign for greater awareness of an illness that affects an estimated 250,000 people in the UK, and millions worldwide. ME has been recognised as a neurological condition by the World Health Organisation since 1969. Symptoms include overwhelming fatigue made worse by exertion, pain, sensory sensitivity, sleep disturbance and cognitive dysfunction. The level of severity varies greatly between individuals, with most sufferers able to maintain a degree of presence in the outside world.
But severely affected ME sufferers “are similar to a critically ill patient 24 hours before they die, except they live like that for years and years,” professor Ron Davis of Stanford University, one of the world's leading scientists in this field, told me. Known internationally for his work on the Human Genome Project, Davis has now set his sights on discovering the causes of ME, and ultimately, a cure.
The use of the name “chronic fatigue syndrome”, and the adoption of indistinct diagnostic criteria, has allowed ME to be swept under an umbrella of generalised fatigue states. “The medical profession has largely ignored this disease,” Davis told me. “This is the last of the world’s major illnesses to be so poorly understood.”
Davis was speaking in support of #MillionsMissing, a worldwide campaign raising awareness of ME and calling for greater research investment in the illness. Demonstrations were staged in May and September 2016 in 25 cities around the world, including Washington DC and London. Powerful pieces of protest art appeared in prominent political locations. In London, hundreds of pairs of shoes covered the pavement outside the Department of Health, a display mirrored in other cities worldwide.
“These shoes represented the millions of ME patients whom the outside world never sees,” I was told by Jennifer Brea, founder of the #MEAction advocacy group which organised the protests.
The initial #MillionsMissing demonstrations in May received 100,000 mentions on social media and generated 38,000 petition signatures. Such was the success of the campaign, that a second wave of protests took place in September, generating even more interest.
No terminology exists to describe lives blighted by the severest forms of the illness. Confined to their bed, and often tube-fed, those afflicted are so intolerant of any light or sound that even a whisper can induce a dangerous worsening of symptoms. Pain is usually extreme and unrelieved even by morphine. Paralysis, seizures and incontinence are not uncommon.
“The standard tests that doctors conduct do not show any abnormality and so they conclude that there is nothing wrong with the patient,” Davis told me. “If they looked deeper they would find a large number of molecular problems.”
As one of the ‘missing millions’, over time, I have made progress. But I remain almost entirely house-bound and dependent on full-time care. It is not known why some people with ME improve while others do not, though avoiding over-exertion and living within limits generally gives the best chance of improvement. There is no universally effective treatment and little by means of symptomatic relief.
Full recovery is rare, and in the most severe cases ME can be life-threatening. Even the true scale of fatalities is unknown, as Davis explained to me: “The cause of death is usually listed as something else, so we don’t know how many die from ME.”
A critical part of the #MillionsMissing campaign is highlighting the lack of international research investment. A study last year comparing the impact of 21 major illnesses, including cancer, stroke and heart disease, found that people with ME had the lowest quality of life by a significant margin. Yet UK government funding of biomedical research over the last 10 years is estimated at just £1.8 million. By contrast, £166 million was directed towards heart disease in 2012 alone.
It is a similar situation in the US, where in 2015 the National Institutes of Health provided less research funding for ME than for hay fever.
Thousands of existing studies have shown abnormalities throughout the body, but the paucity of funding means that no overall picture or diagnostic test has yet been established. In common with other illnesses throughout history, the gap in biomedical understanding has been filled by psychological explanations, with grave consequences for those with the illness.
Research funded by the UK government has focused heavily on behavioural therapies – in particular, cognitive behavioural therapy (CBT) and graded exercise therapy (GET) – despite the fact that these treatments run counter to physiological understanding of the illness and often make it worse.
A detrimental response to exercise – known as post-exertional malaise – is a cardinal feature of ME, and numerous studies have shown abnormal physiological changes to support this. A landmark study demonstrated a marked increase in symptoms and disability when exercise capacity was tested on consecutive days. Such results have not been seen in other illnesses and may be unique to ME. Renowned ME specialist Dr Paul Cheney told an international conference in 2010: "The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane."
As Davis told me: “The hypothesis behind GET and CBT is that patients have “false illness beliefs” and are “afraid” to exercise. The recent molecular findings indicate that this hypothesis is clearly wrong. Patients often get worse, sometimes irreversibly, when they exert physical, emotional or cognitive effort over their own personal limit.”
The 2011 PACE trial claimed that these treatments could help ME, but has been strongly criticised within patient and scientific communities. In February, Davis was among a group of eminent international scientists who condemned the trial's “major flaws”. In a recent dramatic development, a tribunal ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial, to allow independent evaluation of the results. In published reports it was claimed that more than a fifth of patients recovered following GET or CBT. During the trial, however, the measurement of what constituted recovery was altered. When the data was reanalysed using the original study plan's definition of recovery, neither GET or CBT had any significant benefit. Yet this study has influenced NHS policy for years, with many doctors still rigid in their belief that the illness is psychological.
“When standard tests are normal, doctors develop a belief that it is all in the patient's head – that they have a psychological problem,” Davis told me. “Even when confronted with molecular data that shows a clear abnormality, the doctor refuses to change his or her belief.” Davis and his team have been examining metabolites, molecules produced by cells during metabolism. Studying them can give information on what might be going wrong in processes such as energy production. Davis has recently found extensive alterations in the level of over 100 metabolites in the serum of ME/CFS patients, compared to healthy controls. Furthermore, a recent study by Dr Robert K. Naviaux, known internationally for his work in human genetics, has shown "comprehensive metabolic deficiencies" that, according to Davis in an online commentary, mark the most "important and groundbreaking" development in ME research so far.
This is in addition to long-standing findings from many other researchers, showing altered patterns of cytokines (signalling molecules that regulate immune response) and other immune cells. "Much of this data has been known for years, and disregarded by doctors," Davis told me. "I have shown the metabolic data to several doctors, who shake their head, "no", and continue their belief that these patients need psychiatric help."
The resulting picture for those with ME is one of desperation. Profoundly ill and disabled patients are left in the wilderness with little or no medical support, often blamed for their symptoms and forced into treatments that cause deterioration. Extreme symptoms, such as the inability to swallow, may not be taken seriously by professionals, leaving patients at serious risk of life-threatening complications.
My suffering would be reduced if I knew that medical science was investigating the illness to the best of its ability. The reality is very different. Almost no research has been undertaken on the most severely affected, meaning that the distinct neurological and immunological features prevalent in this group of patients are completely overlooked.
But it is a situation that Ron Davis and his team are determined to change. Working in collaboration with doctors and scientists from around the world, Open Medicine Foundation is collecting samples of blood and other bodily fluids from some of the most severely ill ME patients. These samples undergo cutting-edge analysis, including DNA and RNA sequencing. "We are measuring everything we are able to measure: creating a huge data-set, the biggest ever collected on humans, and looking for patterns," Davis told me. "It's unlikely that there is a simple genetic cause for this disease, but very likely that there are genetic components involved in what particular symptoms are experienced by patients." Existing studies have shown changes in gene expression that correspond to some of the key symptoms of ME, including immune disfunction and poor energy production.
The result of all of this is the generation of unprecedented amounts of data on the severely affected, which can be used to identify biomarkers, causes and potential treatments. “This disease affects many bodily systems and investigating it requires researchers from diverse specialties,” Davis told me. “I believe that ME research will lead to discoveries about energy utilisation that will be relevant to most chronic diseases and ageing. It will be heralded as the most important medical breakthrough of the twenty-first century.”
Other teams around the world are also working to find answers. ME Research UK is one of a few charities in the UK supporting biomedical research into the illness. They receive no government funding and rely solely on donations from supporters, but to date have funded 42 studies, with a number currently active. Dr Neil Abbot, Research and Operations director, told me: "To date, the most important findings have centred around the autonomic nervous system, which controls some core body functions such as heart rate, digestion and breathing; the circulatory system, particularly the heart and blood vessels which supply oxygen to tissues; and the musculoskeletal and immune systems."
ME Research UK was part of a consortium of charities that set up the UK Biobank, at the London School of Hygiene and Tropical Medicine, in May this year. It contains samples from over 500 patients that can be used by researchers anywhere in the world. Meanwhile in Australia, a team at Queensland’s Griffith University claims to have found immune markers that could be used to diagnose ME with a blood test.
But for Ron Davis, the fight is also personal. His 32-year-old son, Whitney, is bedridden with severe ME. At the end of 2015, Davis made a personal plea for funding of his work, explaining that his son’s condition is so severe that he is at risk of dying. In a social media campaign he wrote: “I know I’m not the only one working on this disease but there are too few researchers, too few medical specialists, too little research funds, and too many patients. I know I, or someone, can figure this out. It requires a lot of new data and a lot of thinking.”
One year on, the struggle continues. “Lack of funding is a very serious problem. Having review committees and administrators not believe that ME is a real disease makes it almost impossible to do research on ME,” Davis told me. “Long term substantive funding is required.” It is a view echoed by Neil Abbot: "In reality, for breakthroughs to occur, there have to be many, many groups around the world undertaking programmes of research across a range of fields. At present funding is sparse and researchers see little chance of high level investment."
Along with funding for quality biomedical research like that being undertaken at Stanford, education of medical professionals is also urgently needed. Some of my most traumatic experiences have come at the hands of professionals who lacked understanding of ME. When I fell ill as a child I had many tests, including CT and MRI scans. When the results showed no recognised abnormalities, attention turned to investigating my mental health. I was treated as having a psychological illness, despite there being no evidence to support such a diagnosis. The treatment given to me was often brutal, based on the belief that I could and should be forced out of my state of illness. On numerous occasions, I was forced to walk until I collapsed. The physical and emotional consequences of such treatment are felt to this day.
Until there is greater scientific understanding of ME, doctors are limited in how they can respond to the illness. But of greater concern is a perceived unwillingness among many professionals to listen to and respect what their ME patients tell them. Lack of knowledge should not equate to lack of compassion. I fear admission to hospital, knowing that I am likely to encounter doctors who do not believe I am physically ill, and who view my symptoms as erroneous beliefs to be stamped out. 26 years on I remain vulnerable to the same mistreatment I suffered as a child, a situation which is unacceptable.
“Patients suffering from ME have been effectively ignored for years by health agencies and mistreated by the medical community,” Jennifer Brea told me. “People have reached a breaking point. It’s time to demand fair treatment.”
The demonstrations in May and September drew attention to the devastating scale of ME: not only the illness itself, but the political neglect that allows it to continue to destroy lives. It is not only those suffering who are affected, but the wider world too. Those trapped in darkness and pain are human beings rich with potential. People of extraordinary tenacity and creativity, who have much to offer. Their loss is the world's loss, too.
The pair of shoes I sent to the London demonstration symbolised the fact that I have rarely worn shoes in three decades. In addition, I sent shoes in memory of a close friend who died, aged 30, after living with ME for most of her life, and pairs to represent other friends too ill to even read of the campaign. When the protests return next year, I will again speak out through those empty shoes.
Thursday, 15 December 2016
By Joan McParland
On 13th October 1999 my life became unrecognisable.
I went from being fit and healthy, able to work full-time as a schools meals organiser, look after my family and enjoy an active social life, to being completely bed-bound from an illness I had never heard of.
I woke up with felt like a bad flu with food poisoning on top. I thought it was just a ‘tummy bug’ and I’d be better in a few days. As the days turned into weeks, my worried family then called our GP for a home visit.
I was nauseated, dizzy and weak, unable to stand upright, daylight somehow hurt my eyes and any noise made the symptoms much worse. It felt as if my brain was inflamed and there was lead travelling around my veins, making it almost impossible to move or hold a conversation.
One minute I was shivering cold then sweating profusely. I seemed to be living in some sort of hazy fog as my memory was affected and I couldn’t understand words in a book or newspaper or even follow a story in a television programme. I also suffered very frightening transient paralysis.
Seventeen years later, I remain severely debilitated by Myalgic Encephalomyelitis (ME).
My supportive GP suspected I was suffering Viral Labyrinthitis. Many blood tests later, still, nothing abnormal showed up after having almost every organ in my body tested, prodded and scanned and I honestly thought I was going insane. How was this possible when I felt like I was dying and it also looked that way from the massive weight loss I’d suffered from being too ill to even eat.
One day, after having suffered yet another period of paralysis my GP was called to my home, I remember him standing beside my bed and saying “I’m sorry, I had hoped we were not looking at severe ME but I now believe this is the case, there is no one I could send you to and there is no treatment.”
Although I didn’t believe the hopelessness of the situation at that time, I was soon to learn. Not only was there no ME specialist, effective treatment or cure, I was to also be faced with disbelief from many medical professionals I later turned to for help.
In sheer desperation, I then turned to alternative therapies, private clinics and handed over vast sums of money to many who promised a ‘cure.’ On hindsight, the world’s top scientists can’t cure ME, yet desperate patients will gladly be parted from their money to anybody who claims they can offer relief and many charlatans still do!
Eventually, a social worker was sent to access my helpless state of health, she told me ME was a mental health condition and I would get better with antidepressants but didn’t qualify for help as my family were able to care for me.
Another NHS consultant recommended antidepressants and although I knew I was not depressed, I was extremely frustrated to find help, I dutifully tried these mood modifying drugs but to no avail.
I still didn’t know the true facts about the disease so I agreed to cognitive behavioural therapy at home. The therapist told me I just needed to get out of bed more and learned me some relaxation techniques.
After many CBT sessions and unfortunately for the therapist, his questions on childhood traumas and past levels of stress did not account for my levels of physical disease, I was no better, in fact I was worse from the efforts of getting up for his visits!
Approximately eight months of complete bedrest, I gradually began to feel a bit better. Each day I could get up a little longer and as the months passed I eventually decided I was just about able to go back to my job.
I still had the nausea and dizziness but after much trial and error, my excellent GP had found medications to keep these symptoms just about bearable.
The exhaustion had improved too so my belief at the time, was I could get fitter if I went back to work after of a year not being able to do anything. It was amazing to get back my career and friends and be able to take part in life again, although it meant spending most of my time off resting to try to get the energy to keep going.
I soon discovered trying to ‘fight off’ ME or think positive thoughts does NOT work and after three attempts to return to work, I suffered a massive relapse which plunged me into another seven years of severe ME and the damage is now irreversible. I also developed severe headaches and pain in my muscles, my joints often just ‘give way’, sometimes even my skin hurts and it’s just too painful to even brush my hair.
I then received a further diagnosis of fibromyalgia and postural orthostatic tachycardia syndrome (POTS)
I have spent many, many years of relentless suffering and contemplating the situation and I made a pledge to myself that if I ever improved enough to do anything, it would be to fight for the truth about this disease and use my experience to somehow help others.
In 2009 I was given a laptop for my birthday, I began to educate myself on ME and quickly discovered reliable resources of information.
I learned how to manage the disease, to pace all activities and to keep within my severely restricted energy levels. I learned lying flat using the laptop, saved physically energy which allowed my brain to function better and over the next two years working on my ideas, I was eventually able to set up a patient support group in Newry in April 2011.
With a massive amount of help and support from my family and after finding other like-minded and determined ME patients, we began a very successful awareness and education campaign.
I measure that success by the large numbers of both patients and medical professionals who are contacting the charity for help and reliable information.
We obtained charitable status in 2014 and with today’s technology, I have found it’s even possible to organise entire conferences from my bed, bringing international ME experts to Northern Ireland to educate the masses!
On the odd occasions when I’m able to go out, I often meet friends who congratulate me on my ‘recovery’ but little do they know I’ll be trapped in the bed again after the effort of actually getting out for a few hours.
Others will often say they too have ME as they’re feeling tired, I’ve learned to save energy on explaining that feeling tired has absolutely nothing in common with the devastating symptoms of neurological Myalgia Encephalomyelitis, I just nod and hand them an information leaflet.
I have learned many things since 2009, one being, not to blame healthcare professionals for the lack of understanding and sometimes their disbelief of the severity of ME.
A FOIA (Freedom of Information Act) reply I submitted to NI medical training agencies, states doctors are not given any specific education on neurological ME and are therefore as susceptible as the general public to the misinformation and scepticism surrounding this disease.
Although I remain mostly bed-bound, I am grateful to have improved enough to be upright for a couple of hours on really ‘good’ days. I have had to learn to use these small amounts of energy wisely as the cost of trying to push through the symptoms results in more suffering and a further decline.
I may function at a snail’s pace but to be able to play a small part in the world again gives me a sense of purpose and I’ve learned to focus on what I CAN do, no matter how small, rather than on what I can’t do.
2017 offers great hope, as scientists around the globe get closer to producing a diagnostic test and effective treatment for the 17 million ME patients worldwide.
In the meantime, HOPE 4 ME & Fibro NI will continue to lobby health commissioners and decision makers to provide a dedicated NHS ME Clinical Consultant. Our surveys of GPs also showed doctors were not confident in offering a diagnosis of ME and would prefer to send suspected cases to a clinical Consultant.
Early diagnosis and the correct self management advice of enforced bedrest and symptom management control, has been proven to give patients the best chance of improvement and would hopefully save others from having to go through decades of this nightmare illness without the support they deserve and is given to all other major chronic diseases.
*For more information about Hope 4 ME and Fibro, phone: 07712 892834 (2-4pm only), email: email@example.com, website: http://hope4mefibro.org/
Thursday, 8 December 2016
By Catherine Mackenzie, Christian Focus Publications, 7 December 2016
Christian Focus Publications would like to extend its sincerest condolences to the family and friends of our dear Helen Roseveare, who passed away this morning. She dedicated her life to serving others even in the deep trials of life. She pioneered vital medical work in the rainforests of what is now the Democratic Republic of Congo and was an internationally respected speaker with WEC ministries. We are thankful at Christian Focus for Helen’s ministry through the books we have been blessed to publish. She spent her life in service for the Lord and today she is with Him, worshipping Him, in heaven.
Catherine Mackenzie, Children’s Editor at Christian Focus, shares the impact Helen Roseveare had on her life.
This morning a good friend and encourager Helen Roseveare passed away, she had been longing to go home to be with Christ. Now this has happened we who remain look back at her life and rejoice in the work that the Lord gave her and in the witness she gave to his worthiness.
It was eleven years ago that I met Helen Roseveare for the first time. She had not long celebrated her eightieth birthday. I’d read her books and knew her story and somehow or other I had been invited to stay with her in Belfast. It was great to actually meet one of my heroines. She was not only encouraging, she was challenging. It was an environment – all be it just for a weekend – where I felt safe to be honest with her and Pat, her friend, about the challenges and struggles of my own little life. Even though she had been through so much herself (if you don’t know what I mean then read her books) my problems didn’t feel too insignificant to share. And the words she gave me before I left on the flight from Belfast to Inverness were straight forward – just telling me to keep on going. And I’m thankful to her and to God that I have through His strength.
After that she came over to my congregation to do a conference. It was there that she gave, as part of her message, four little words that I believe were the backbone to her life and reinforced, for me, the message of her books, the message she gave me before I left Belfast and the message her Lord and Saviour, Jesus Christ, gives all believers.
“Jesus is Worth it”.
Towards the end of that conference I had the pleasure of taking her and Pat for a tour of the Black Isle – a Scottish peninsula near Inverness. What took place at lunch that day is one of several distinct ‘Helen and Pat’ memories that will stay with me for the rest of my life. If you’ve not met either of them – let me describe these two women of God… in two words (believe me I could pick another 100 words to describe them and I wouldn’t do them justice.)
Smart. They both graduated in medicine at a time when to be a female graduate in any discipline like this was rare.
Cosmopolitan. Both travelled extensively – before the easy days of online booking and satnav.
But if you had been the couple sitting beside us in the restaurant that day you wouldn’t have looked twice. You would have presumed ‘they’re just two little old ladies’. But that’s one point where the church and the world differs – God’s kingdom never puts the word ‘just’ before any category of believer – particularly little old ladies.
Our neighbouring diners were given a visual and audible lesson in this when, after lunch, Pat and Helen’s conversation went as follows:
“I don’t think we’ll ever be able to get back to Afghanistan but it is a beautiful country, and the Lord is at work there…” – or words to that effect.
As my chin dropped I could see the looks on the people at the table beside us as they turned and stared. Two women they had just spent the last hour ignoring were talking about a trip they had made to what was now one of the most notoriously violent countries in the world.
Helen and Pat started reminiscing about people who had lived and worked in that region and about the brief time they had spent in a nation that was now in the thick of a conflict that threw up words like Taliban and Terrorist.
I drove them back to my parent’s house and before too long they were on their way back to Belfast discussing, no doubt, their plans for the development of the girl’s clubs they were involved in and the future fundraising for their local church.
So don’t make assumptions about little old ladies… especially when you hear the word church and missionary in the same sentence … they may very well have been where we will never go, have done what we wouldn’t dream of, and have given up what we just aren’t willing to.
Helen Roseveare was a little old lady, during the time I knew her, but really age didn’t come into it. She was a woman after God’s own heart and Jesus was the one that her heart longed after. She’s with him this morning – still part of the church as she worships more fully in heaven. We who remain, continue as she did once to long for home.