The crippling disease you have never heard of

12 Mins read

“Have you ever laid in bed and felt so ill that you truly thought you were going to die?”

That’s what teenager Ellie Bunce wrote in a letter published by the Huffington Post on April 13, 2018. A little more than two years earlier, she had been diagnosed with myalgic encephalomyelitis, commonly referred to by its acronym, ME*.

ME is a chronic disease that manifests itself as unrelenting fatigue, muscle pain, malaise and cognitive dysfunctions. It is a profoundly disabling illness that leaves one in four patients bed-bound, with the most severe cases requiring tube feeding. To this day, the cause of the disease is unknown and there is no approved treatment for those who suffer from it.

[pullquote align=”right”]“Sometimes, I would have to crawl to the bathroom because I couldn’t stand”[/pullquote]In about 60% of cases, ME is preceded by a viral illness such as gastroenteritis or glandular fever. In Ellie’s case, it was the latter that was to “trigger” the disease.

At the time she fell ill, in April 2015, Ellie was a second-year student at Durham University and had dreams of becoming an Olympic rower.

Although more than four years have gone by since then, she still remembers clearly the first stages of her illness: “One day, my whole throat swelled up and I was having difficulty breathing, so I went to the A&E. There, I was told that it was just a viral infection and that I would be OK.”

Some of Ellie’s university coursemates doubted the reality of her illness, insinuating she had asked for deadline extensions out of laziness. [Ellie Harriet Bunce]

In the following weeks though, after a short-lived and much illusory recovery, Ellie’s health kept deteriorating to the point that her rowing coach suggested she get tested for glandular fever.

After she tested positive for the virus, the then-19-year-old tried to go back to her daily life but soon found out she simply couldn’t. “I had a sore throat all the time and, I felt extremely tired. I would literally do the tiniest things, like sitting up, and would be exhausted shortly after.”

On account of her precarious health, Ellie chose to take some time off rowing and asked for extensions on her university work. Despite her best efforts to recover though, over time her condition kept getting worse to the extent that she could no longer get out of bed. “Sometimes, I would have to crawl to the bathroom because I couldn’t stand,” she recalled.

Eventually, Ellie was forced to leave her university course and move back to her home town, Oxford, where her parents started looking after her day and night, occasionally feeding her when she was too tired to even move her arms.

[pullquote align=”right”]“Have you ever laid in bed and felt so ill that you truly thought you were going to die?”[/pullquote]Ellie was only diagnosed with ME in January 2016, after receiving two wrong diagnoses. The first specialist she was referred to ascribed her condition to a personality issue.

“He told me that my health problems were due to me not being motivated to get better,” she recalled. “As a treatment plan, he suggested I wake up every morning at nine, have a shower and take a long walk.” The second specialist Ellie went to diagnosed her with post-viral fatigue. Only later in time, given the persistence of the symptoms, would he change the diagnosis to ME.

Sadly, Ellie’s late diagnosis is not an isolated occurrence. It is very common for ME patients to be diagnosed poorly, the reason being not only the absence of a direct diagnostic test but also the fact that the disease shares many of its symptoms with a number of other pathological conditions.

Both these factors, frequently combined with a poor understanding of the disease on the part of healthcare professionals, contribute to ME being often diagnosed through a process of elimination.

When asked about her reaction to the diagnosis, Ellie said: “I didn’t really know what ME was at the time but I had been ill for such a long time that I remember thinking: ‘Well, at least there’s something wrong and there’s a name for it.’ I wouldn’t say that getting the diagnosis was a relief but at least I knew that something wasn’t right with me.”

In the months following the diagnosis, Ellie’s life kept being disrupted by the disease. When asked to describe her typical day while being ill, she said: “I would wake up at midday and I’d have my mom make me breakfast. Some days I’d be able to eat it myself, some others I’d have her feed it to me. Then, whenever I could get up for lunch, I’d get up but most of the time I’d just stay in bed for the whole day.”

ME sufferer Ellie Bunce playing with her dog while sitting on a wheelchair

ME seriously affects patients’ cognition, which is why Ellie’s memories of when she was ill are scattered and hazy. [Ellie Harriet Bunce]

Bed-bound by fatigue and acute muscle pain, Ellie was regularly denied even some of the most physically undemanding pastimes such as reading, listening to music and watching TV. As with many other patients, ME significantly reduced her attentiveness and heightened her sensitivity to noise and light. Stripped of even the simplest life pleasures, Ellie soon developed clinical depression and anxiety.

It is not uncommon for ME to have a serious impact on the mental health of its patients, with the stigma that partly still surrounds the disease often being responsible for further psychological distress. Those circumstances, alongside the incontestably high level of physical impairment caused by the illness, make it so that “the well-characterised ME sufferer may experience on average greater disability than those with Type 2 diabetes, congestive heart failure, sciatica, lung disease, osteoarthritis, multiple sclerosis and even most cancers.”

However, not only does the disease destroy the life of those who suffer from it but it has also been shown to seriously affect the lives of carers too. Speaking on how her illness impacted on the wellbeing of her parents, Ellie said: “It was really traumatic for them to see me in that awful situation. They thought I was going to die quite a lot of times, especially when I had fits and couldn’t breathe. Even now, although I’ve made a full recovery, they’re paranoid that something might happen to me at any time.”

Although her parents were the people Ellie leaned on the most while being ill, she also received considerable support from the National ME Association. In particular, they put her in touch with other young patients, people her own age who she would regularly chat with and share updates.

[pullquote align=”right”]“They thought I was going to die quite a lot of times, especially when I had fits and couldn’t breathe”[/pullquote]Although she has now fully recovered, Ellie is still in contact with a number of young adults suffering from ME: “People still message me on Instagram and Facebook all the time. Some ask me questions, some others just need somebody to talk to. I just love being able to offer that support and advice.”

Prior to her recovery, Ellie had also engaged in a number of media-related initiatives aimed at increasing awareness about ME: “I did loads of interviews. I was on a lot of radio programmes and I was also in publications like The Sun and You magazine, and on BBC Oxford as well.”

Considering the devastating effects the disease has on the lives of the sufferers, media coverage of ME is ridiculously low. Although a film released in 2017 and titled Unrest paved the way for the illness to become more talked-about, much still needs to be done for public awareness to rise to the due level. That is exactly why it is so important that stories like Ellie’s one find their way into major media outlets.

Former ME sufferer Ellie Bunce photographed 7 months after her recovery

Ellie claims that her illness was educational for many of her friends because it opened their eyes to the daily ordeal of ME sufferers [Giampietro Vianello D.]

Besides fighting to get ME greater attention, Ellie’s biggest focus is now travelling. When we interviewed her, she had just returned from the US and was getting ready to leave for a tour of South East Asia. Speaking on her new-found passion for globe-trotting, she said: “I just want to do everything that I can now that I’m better. I want to grab life a bit more.”

Suffering from a disease as disabling as ME significantly changed Ellie as a person: “I’m a lot more positive and appreciative of things that my friends would look past. When I go away travelling, I could literally just be sitting in the car, looking out of the window and be really happy, whereas other people would be really bored. I’m definitely a lot more thankful for things,” she concluded with a smile.

ME affects one in 500 people in the UK and its financial burden has been estimated as £3.3 billion every year (£13,200 per patient), although it could actually be as high as £4.8 billion.

[pullquote align=”right”]“I just want to do everything that I can now that I’m better. I want to grab life a bit more.”[/pullquote]In addition to that, ME incapacitates one in four patients and has been shown to have a greater impact on the well-being of the sufferers compared to many other chronic pathologies.

In spite of all these factors, the services provided by the British healthcare system to those affected by the illness has long been largely inadequate.

In 2014, of the 49 NHS English specialist services for people suffering from ME, only 27 (55%) provided support for severely ill patients that was compliant with the guidelines set out by the National Institute for Health and Care Excellence (NICE). That piece of data is all the more alarming when considering that half of all people with ME need “input from specialist services”.

Other than that, a study conducted at the University of Bristol between 2008 and 2010 exposed the inequality of access to ME specialist centres by showing how patients from deprived areas were half as likely to be referred to specialist services compared to people residing in more affluent areas.

Around 45% of English ME specialist services do not provide support for severely ill sufferers or do so in a way that doesn’t meet the NICE standards.

The system-wide deficiencies are frequently aggravated by a poor clinical understanding of ME on the part of GPs and other healthcare professionals. The evidence validating such claims is plentiful and once again pretty discomforting.

To cite one example, in 2014, national charity Action for ME asked 50 GPs from Dumfries and Galloway, Fife and Highland what their training background on ME was. The results of the survey revealed that 82% of GPs had not received any training at all on ME.

Albeit partly attributable to chronic diseases being a “soft target in an age of NHS austerity”, poor knowledge of ME within the healthcare industry is indeed a by-product of past scepticism over the reality of the disease. During the 80s most GPs didn’t accept the existence of ME as a pathological condition; even as late as 2005, 227 out of 811 English GPs didn’t accept or were doubtful of ME as a “recognisable clinical entity”.

Speaking on the repercussions that such widespread disbelief in the disease has had on NHS services for ME patients, Tony Golding, ME sufferer and leader of a London-based support group called Network MESH, said: “Unfortunately, the NHS doesn’t devote many resources to ME. There are very few specialists around and even fewer clinics. ME definitely doesn’t get a fair share.”

According to patients, the NHS seems to also offer very little in terms of counselling and patient support programmes, with the gap having been filled thus far by national charities such as the ME Association and Action for ME, and local groups like the already-mentioned Network MESH.

While national organisations tend to provide online support for youngsters and adults, local groups organise activities targeted at older patients, especially those who don’t have access to the Internet.

Members of the Richmond and Kingston ME support group holding a stall at Kingston University

Members of one of the biggest ME support groups in London, the Richmond and Kingston ME group, running an “awareness stall” at Kingston University [Fernando Campo Curiel]

Sadly, the survival of many of these local groups is constantly endangered by the shortage of funding: “[Network MESH] are very lucky because a few years ago a very wealthy man joined our group and gave us several thousand pounds. Most of the other groups really struggle with fundraising and live off whatever they can get hold of, whether that comes from raffles, sponsorships or private donations,” Tony said.

This situation raises inevitable concerns as to how severely the potential dissolution of local support groups might impact on those ME sufferers that cannot get help online. Those concerns are all the more justified by the unlikeliness that NHS services for isolated patients will grow anytime soon.

“The problem here is that there is no biomarker (a molecule or gene by which a particular pathology can be identified, ed.) for people affected by ME and there’s also no treatment,” Tony explained. “Finding a biomarker and a cure is the key to mobilise NHS resources. I’m afraid ME won’t be a priority of the healthcare system unless that happens.”

Analogously to healthcare services for ME patients, UK-based biomedical research into ME has long been substantially underfunded.

Data shows how in the past the disease received a disproportionately small amount of research funding compared to other, less-prevalent pathological conditions. For instance, between 2007 and 2016, despite affecting 150,000 more individuals than MS, ME received one seventh of the funding accorded to the former.

The situation was even worse worldwide, where, over the same time period, ME was given one twentieth of the research funding received by MS, although it affected 14.5 million more people.

Table comparing different chronic diseases based on the amount of research funding they each received between 2007 and 2016

Between 2007 and 2016, ME received a disproportionally little amount of research funding compared to other, less prevalent chronic diseases.

The shortage of research funding for a disease as crippling and as financially burdensome as ME is once again to be ascribed to the clinical misconceptions the illness was subject to until not very long ago.

Luckily, according to Kathleen Mudie, a research fellow at the London School of Hygiene and Tropical Medicine (LSHTM), there is evidence that this is changing: “The situation is improving in the US and in Canada. We are hopeful that the same will happen in the UK and Europe, where the funds made available for ME research have been almost negligible in comparison to the funding available for other chronic diseases.”

Table comparing different chronic diseases, including ME, based on the global research spend per patient between 2006 and 2015

Despite affecting at least 17 million people worldwide, ME is among the chronic diseases with the lowest amount of global research spend per patient.

The improvement Kathleen spoke of has only recently gained momentum; a few years ago, “it would be very common that you would submit a grant proposal to a funder and they might not have an expert who was qualified to tell them whether or not the project was actually of merit, whereas now there are a number of specialists in the field.”

The pioneering work of the CureME team, a London-based group of researchers whose Kathleen is currently part of, started long before this advancement could finally come about.

Founded in 2007 thanks to a grant awarded by the Big Lottery Fund, the project’s initial aims were to assess the prevalence of the disease across England and to evaluate its impact on the wellbeing of patients and carers.

Following the success of the first phase of research, in 2011, through additional funding provided by national ME charities and private donations, CureME established the first British ME biobank, a repository where biological samples from more than 600 donors (including healthy controls and MS sufferers) are currently being stored for research purposes.

[pullquote align=”right”]“Finding a biomarker and a cure is the key to mobilise NHS resources. I’m afraid ME won’t be a priority of the healthcare system unless that happens.”[/pullquote]Since its creation, the biobank has significantly reduced the costs of research into ME, something that, in Kathleen’s words, “is paramount in a field that has been underfunded in comparison with other chronic diseases”.

By sparing researchers the time to recruit study participants, biobanking has also considerably accelerated medical investigations into ME’s potential biomarkers. One of such investigations, namely a gene-expression study, is currently underway at LSHTM.

It is a common opinion among ME researchers that the identification of a biomarker would be a giant step towards a greater understanding of the disease’s physiological mechanisms and, possibly, towards the development of an effective treatment.

Other than that, finding a biomarker would also be vitally important for the following three reasons: first, it would lead to the creation of a diagnostic test, which would in turn favour early diagnoses; secondly, it would remove, once and for all, the stigma that in some areas of society is still attached to the disease (as recently as January 2016, The Sun referred to ME as “yuppie flu”, a derogatory term dismissing the illness as a form of burnout for young urban professionals); finally, it would unlock resources for the provision of additional healthcare services both in Britain and in the rest of the world.

Close-up shot of a number of sample vials

LSHTM currently holds more than 30,000 blood samples, which can be accessed by researchers across the world [Flickr: Daniel Soñé]

As efforts to identify ME’s biomarkers continue at LSHTM and in other labs across the UK, questions inevitably arise as to how and to what extent Brexit will affect British researchers. “It is very difficult to predict [the impact of Brexit] in the current climate. In general, I think the UK will have difficulties getting funding from European bodies. That will make it harder for us researchers as well,” Kathleen said.

Regardless of this though, there is a chance that the CureME project and possibly other UK-based researchers will continue receiving EU funding through their involvement in the European Network for ME/CFS (EUROMENE).

Started in 2016 by the Cooperation in Science and Technology Association (COST), over the past three years the EUROMENE has successfully fostered collaboration and data-sharing between a large number of research centres across Europe.

According to Kathleen, the connections that the CureME team has established within the EUROMENE “will be thriving irrespectively of potential political changes”, so allowing researchers at LSHTM to keep carrying out crucial biomedical studies into ME.

It is to be hoped that, in time, these studies together with other investigations being conducted in the rest of the world will yield the expected results, leading to the identification of ME’s biomarker (or biomarkers) and, ultimately, to the manufacturing of a cure.






* ME is also known by the name of chronic fatigue syndrome (CFS). We have deliberately chosen not to adopt this nomenclature as it is regarded as offensive and inappropriate by the patient community. According to those who suffer from it, the term “fails to reflect the diverse symptomatology and severity of the illness” and using it would be comparable to “describing dementia as ‘chronic forgetfulness syndrome’”.

Featured image courtesy of Sacha Bryning via Instagram.

Edited by Kesia Evans & Laura Scheepers.

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