Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?

We need to draw attention not only to the illness itself, but the political neglect that allows it to continue destroying lives.

Naomi Whittingham
19 December 2016

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Night window. Flickr/Colin Hughes. Some rights reserved.

Night window. Flickr/Colin Hughes. Some rights reserved.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.

No terminology exists to describe lives blighted by the severest forms of the illness.

“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. 

The resulting picture for those with ME is one of desperation.

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.

The physical and emotional consequences of such treatment are felt to this day.

“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.

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