Julie Marshall, like all over ME/CFS sufferers, wants better understanding of the chronic illness. Photo / Alan Gibson
Julie Marshall broke down in her GP's surgery before her debilitating symptoms were believed. When she was finally diagnosed with ME, treatment was lacking. Natalie Akoorie talks to Marshall, carers and a psychology academic about Chronic Fatigue Syndrome.
Julie Marshall can't remember dates anymore.
Her cognitive function is not as good as it used to be - a symptom of the chronic illness she suffers from - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS.
It's estimated 20,000 New Zealanders are "missing" because of the disease, typically triggered by a viral infection, like glandular fever or influenza, that the body never recovers from.
People with ME/CFS are referred to as "missing" because they have disappeared from their own lives.
Many no longer work or go to school. They can't parent or run a household. They don't go to social events or play sport. They can't maintain friendships or relationships.
In severe cases the devastating illness can render some sufferers so unwell they are bedridden, unable to tolerate light, touch and sound, and in extreme cases, not moving, talking or eating.
It is a life of existence and survival, not of joy or promise.
ME/CFS causes extreme exhaustion, a post-exertional malaise, usually after a sufferer has used too much energy, sending them spiralling into a "crash" they sometimes cannot recover from.
It can strike anyone, not distinguishing between ethnicity or socio-economic status, though women are more afflicted.
It was first called Myalgic Encephalomyelitis in 1955 following an outbreak that lasted four months and affected 292 staff at London's Royal Free Hospital.
There have been many recorded outbreaks throughout history with a more well-known one in New Zealand in the early 1980s in a small Otago town, where the condition became locally known as Tapanui flu.
Later it was referred to as "yuppie flu" and when it was renamed globally as Chronic Fatigue Syndrome it opened the floodgates for it to be labelled a psychological illness.
But the 20 million people worldwide with ME/CFS agree, along with renowned scientists, researchers and doctors, the disease is a physical ailment.
Marshall can attest to the victim-blaming that ME/CFS sufferers endure on a regular basis.
Though the 58-year-old from Hamilton can't remember exactly when she became sick - it was more of a gradual slide than an obvious viral trigger - Marshall is well-versed on how long it took to get diagnosed, or even just believed.
Initially her GP treated the symptoms – insomnia, a feeling of being unstable and extreme exhaustion - as an anxiety-related problem.
"I reached a point where I ended up crying in the surgery saying: 'There's something wrong with my body'."
She was referred to a sleep specialist, then a neurologist. There were tests for epilepsy.
"His initial assessment said I didn't have Multiple Sclerosis. He never discussed ME and my GP didn't discuss ME, and the advice he gave was to see a rheumatologist and the rheumatologist said 'No see and immunologist'.
"So this is the pattern that ME people experience of being referred from one person to another, just like pass the parcel. Many of them get loaded up with drugs, just treating what's on top."
Fortunately the immunologist recognised Marshall likely had ME and referred her to New Zealand specialist, Auckland GP Dr Rosamund Vallings.
Marshall doesn't work anymore. Instead every day she wakes up and assesses how much energy she has.
"I have maybe four to five hours in a day. So I get up and I do the most important things... like make sure there's food."
During a "crash" Marshall cannot get out of bed.
"I feel like I've got rocks tied around my body. Everything just aches. I have problems with my digestion.
"I can't think. I'm extremely sensitive to sound. At my worst I'm not fit to drive. And I can be like that for a period of weeks."
A crash happens when Marshall has kept going on adrenaline, instead of stopping before her energy runs out.
"For a normal person they have a quiet day and recover but for someone with ME the repercussions are much more severe."
ME is a disease you can't see, she says.
"If I don't have the energy I don't go out. People don't see you the way you are most of the time. So it's very difficult for people to understand the condition."
Another typical aspect of ME/CFS is that sufferers are often left impoverished.
"They find it difficult to get a diagnosis, to get the state to recognise their ill-health, to get benefits, to maintain any sort of financial equity."
A staggering 25 per cent of sufferers are permanently bedridden.
In May a world-wide campaign called "#MillionsMissing" aimed to raise awareness of and funding for research into diagnosis and treatment of ME/CFS.
However Marshall says there are troubling reasons why it remains a disease that science has not properly studied.
"It's a disease that mainly afflicts women... that is complex and multi-system and doesn't easily fall into the reductionist model of medicine which prevails at the moment.
"It requires a multi-disciplinary approach for getting to the bottom of it and it also requires funding so these are all barriers.
"A major reason is that people who succumb to the disease disappear, meaning they can't participate in life."
Of those who are bed bound some cannot talk, are tube-fed and live in a chemically-isolated, darkened or over-heated room.
"In terms of the experience of most of the world they simply cease to exist. If you compare the numbers of people who are suspected to have or are diagnosed with ME internationally, it's not the rare disease people paint it to be," Marshall says.
"But it's one that science, for a multitude of reasons, has decided to cast into the waste basket of the psychiatric model.
"This happens when medicine finds something too hard. They hand it over to psychiatry and so psychiatry becomes this toolkit for disposing of the failure of medicine to actually get to the bottom of the problem."
In January Britain's House of Commons debated a motion on ME for more biomedical research funding and MPs across the divide told constituent stories of horror, including one of an 8-year-old girl who was put on an "at-risk" register and admitted to in-patient care with her mother banned from visiting.
The girl was treated with graded exercise therapy [GET], physical activity that starts slowly and gradually increases over time. She did not get better. She reportedly deteriorated and at 15 is bedridden.
Wellington child and adolescent psychiatrist Dr Arran Culver and his psychologist wife Rose Silvester have a son with severe ME/CFS.
The couple feel their son is not in a position to consent to his story being told, other than from their perspective as carers.
"What Rose and I would really like to see is greater awareness of the need to intervene early and better information for parents and clinicians, whatever type of clinician they are, to be able to recognise and diagnose early and provide treatment as early as possible," Culver said.
"Because currently the biggest challenge for families, and this is almost universal, is diagnosis occurs late - it can take years to get a diagnosis - and then the treatment pathways are really unclear."
Getting access to clinicians who have a strong understanding of how to manage ME/CFS is difficult, Culver said, and this has a major impact on families.
"It's really distressing to see a child who is losing their functioning, losing their place in the world because they can't function, but not being able to get access to any help and not being able to understand what is happening."
The couple support other families of children with ME together with Sam Featherstone, setting up the 20,000 missing in New Zealand website.
"Most of the families that we work with and support describe that frustration, that sense of isolation, and the difficulty getting answers whilst also seeing their child suffering, losing their place in education and peer-relationships.
"Losing those really important years through not having early diagnosis and good treatment at the earliest possible time."
Culver says ME/CFS is a forgotten illness and he believes the argument that it is "all in your head" is the main cause of that.
"For a disorder that's reasonably common, severely disabling, causes a huge amount of suffering and has long-term impacts, it's hard to comprehend how our health system has got to this point.
"I don't believe that ME/CFS is a psychological condition. All chronic disabling conditions, particularly during adolescence but at any time, can have impacts on psychological adjustment and require psychological support because of the illness. It doesn't mean that is the illness."
Biomedical research into ME/CFS has resulted in some promising breakthroughs in recent years, Culver says, but more is needed.
"There is very little funding [in the United States] and recognition of ME/CFS. One of the reasons I think that has happened is the belief it has a psychological origin, for which there is very little evidence."
One of those breakthroughs is that of American scientist, Stanford University Professor Ron Davis, a biochemist who has developed what could be the first simple blood test to diagnose ME/CFS.
Davis, who has been credited with some of the major genetic advances of the past 20 years, leads The End ME/CFS project after his own adult son - Whitney Dafoe - was struck down with severe ME.
If the biomarker, published in the Proceedings of the National Academy of Sciences in April, holds up under further study it would be critical to making diagnosis much easier and helping scientists develop treatments.
Davis needs more funding to continue the research but Culver says the idea that ME/CFS is a psychological condition has "derailed" research over the past 15 years.
"And it's really prevented the development of effective services for the management of ME/CFS because while we don't know the cause and have any specific treatments, there is a lot of available evidence of things that are helpful in terms of symptomatic management."
Culver wants the development of clinical pathways in every district health board updating treatment guidelines to recognise the benefit of symptom management and for clinicians to keep an open mind to ME being a physical condition with other physical problems.
Former Alliance MP, academic and women's health advocate Phillida Bunkle has been caring for an adult ME patient for two decades in New Zealand and her native England.
Bunkle co-wrote An Unfortunate Experiment with Sandra Coney in 1987 which exposed an unethical experiment on women with cervical cancer at National Women's Hospital in Auckland, that led to the Cartwright Inquiry and resulted in sweeping changes to health consumers' rights.
But she no longer believes patient rights are protected and says New Zealand's care system is ad hoc when it comes to ME/CFS care.
"It's patchy. There are certainly areas where people are completely uncared for. And I think there's a care crisis actually throughout New Zealand."
Chronic illness is not seen as valid, she said.
"The assumption of the world we live in is that your health is your responsibility, your fault. You fix it. And that this is malingering."
Bunkle said disability services were limited including institutional care for people who don't have family care.
"It's fair to say that people severely ill have been abandoned by the state, by both disability services and medical services."
Early medical recognition, housing and care are the key issues for ME sufferers, she said.
There are basic access to care issues with many sufferers unable to enrol with a GP because they are too sick to attend a surgery.
Being bed bound also means it's almost impossible to get a sickness benefit because applicants must attend an interview.
As a carer Bunkle said the situation was exhausting mentally and physically. Her own life was "comprehensively disrupted" and she felt totally unsupported at times.
"You have to find your way through the medical system to find people who will give you any credibility. The general attitude is that this is self-induced in some way - it's bogus."
A former lecturer at Victoria University in Wellington who set up the country's first women's studies course, Bunkle cannot abide bad science.
Along with Culver, she is critical of the 2007 PACE trial in the United Kingdom, which dominated international clinical policy for the treatment of ME.
The PACE trial was a study of ME/CFS patients that concluded graded exercise therapy [GET] and cognitive behaviour therapy [CBT] helped sufferers improve or recover.
Results from the $9.6 million study of 641 patients, largely funded by the UK Medical Research Council, were published in The Lancet medical journal in 2011 to widespread criticism from patients and scientists.
A conflict of interest not declared to participants also came to light when 42 scientists wrote an open letter to The Lancet stating the trial's main investigators did not tell patients they had financial and consulting relationships with disability insurance companies.
The researchers advised the companies that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work.
The trial was also unblinded, which meant that participants - selected at random - knew the favoured therapy, and the results were measured by a questionnaire.
When ME advocates sought the raw data from Queen Mary University of London, the university spent $480,000 fighting the request and painted the advocates as harassing and vexatious.
Eventually a tribunal dismissed the university's appeal against a request under the Freedom of Information Act [equivalent to New Zealand's Official Information Act] from Australian patient Alem Matthees for the data, made in March 2014.
Re-analysis found that because midway through the trial the researchers had altered their definitions of improvement and recovery, only 3-7 per cent of patients would have been counted as recovered, not more than a fifth as claimed by the researchers.
Bunkle says ME is the ultimate example of "corporate science".
"The difficulty is the hierarchy of the medical profession has committed their credibility to this and cannot reverse it and so the criticism has come from statisticians, and scientists in allied professions."
There has been no retraction from The Lancet however in October 2015 American public health journalist David Tuller's expose Trial by Error raised the profile of the debate once again.
Enter Victoria University of Wellington senior lecturer in psychology, researcher Dr Carolyn Wilshire.
In 2016 Wilshire joined Tuller, Matthees, two other patients - Tom Kindlon and the late Robert Courtney - and biostatisticians Keith Geraghty and Bruce Levin, to reanalyse the data and publish the findings.
"We found that the results were staggeringly unimpressive," Wilshire said. "It was borderline almost not statistically reliable that there was any difference in improvement.
"There was little evidence that CBT and GET led to genuine health benefits. You had no greater chance of recovering after those treatments than you did after a couple of visits to the doctor."
A trio of the original PACE investigators, headed by British professor of psychological medicine Michael Sharpe, rejected the reanalysis and disagreed the changes were problematic or a source of bias.
But Wilshire, in a blog last month, said the argument that it was okay to alter the trial measures because the originals were hard to interpret and the modified ones more accurate and sensitive to change, was a "stunning admission".
"Sharpe and his team seemed to be admitting they picked the measures that gave them the best result."
Wilshire and Kindlon's rebuttal in late March said it was never appropriate to loosen the definition of recovery simply because things did not go as expected.
"For me as a psychologist this raises a lot of questions about how can we test psychological therapies in a neutral way?
"And what about all the other research out there that uses psychological theories? I'm now worried about how much of that would really hold up to the sort of scrutiny we put the PACE trial under."
This included for other chronic illnesses such as fibromyalgia, Ehlers-Danlos syndrome, mast cell activation and postural orthostatic tachycardia syndromes, and even some cancers.
"This is a test case for what we need to confront in psychological science."
Now the UK's National Institute for Health and Care Excellence [NICE] guidelines on ME/CFS treatment are being reviewed and an outcome is expected in October next year.
In the meantime New Zealand doctors largely continue to recommend GET and CBT which Wilshire believes is damaging.
In 2017 the award-winning documentary - Unrest - by ME/CFS sufferer Jennifer Brea confronted many of the myths behind ME and catapulted the movement for change.
Brea tweeted last month that following three neurosurgeries for craniocervical instability and tethered cord syndrome, and 12 months of rehabilitation, she is almost fully recovered and her ME is in remission.
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission: https://t.co/5KFPcbEr1Z
— Jennifer Brea🦒 (@jenbrea) May 20, 2019
Last month the US Congress formally acknowledged the ME crisis by passing a resolution that advocates hope will be the first step toward legislation.
The motion debated by British MPs in January was also passed.
It called on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME and supported the suspension of GET and CBT.
It also supported updated training of GPs and medical professionals on diagnosis and appropriate management advice to reflect international consensus on best practice, and was concerned about the current trends of subjecting ME families to unjustified child protection procedures.
For Marshall the battle for medical recognition of ME/CFS continues.
"There is now a considerable amount of research showing that this is a physical and metabolic disease and until we get a concerted team-oriented approach internationally to get to the bottom of this problem I think the millions of people across the world who are suffering from this disease will stay out of sight."
This summer will be critical to discover if the sharks have started returning.