There is evidence that ME is a serious, even life-threatening neurological illness of viral origin. The WHO defined ME as a neurological illness in 1969 and the USA Centers for Disease Control (CDC) classifies it as a life-threatening disease suffered by millions. In 2010, GP and Daily Mail columnist Dr Martin Scurr said: ‘At last I’ve been convinced that ME is real’ after hearing evidence at the 5th World Conference on ME which ‘shows the condition really does have a viral origin’. Many have been suffering from ME for years and only 5 per cent recover.
Llewellyn King summarises: ‘There are no more normal days, only different degrees of weakness, pain and other symptoms . . . often decades of almost total helplessness. It is goodbye to the life you have known, to work, to hobbies, to lovers, to spouses, to anything short of hope.’ Yet too many doctors, and large numbers of the public, still dismiss ME (myalgic encephalomyelitis) as malingering, laziness or hysteria.
Before I came down with ME, I didn’t believe it was a real illness either and felt scornful about people who I thought simply felt tired, sitting watching TV in pyjamas all day thinking they were unwell. Even after I experienced the true horror of the illness, which felt like being constantly on the point of death, I still didn’t believe it was real because some doctors told me it was psychosomatic. For years I felt self-loathing and had no self-confidence because I thought my symptoms just were caused by weakness of character. ME symptoms vary in different individuals but even so-called mild ME ruins your life. As fellow ME sufferer and author Pippa Stacey points out, if a healthy person felt the way a mild ME sufferer felt on a good day they would go to the doctor. My illness is relapsing and remitting, but each relapse has brought new symptoms and I recover less health and stamina each time I have one. I have been semi-housebound for several years at a time with symptoms like uncontrollable retching and vomiting, severe shortness of breath, weakness, one-sided numbness and pain, migraine, very rapid heartbeat, muscular pain on very slight exertion, severe dizziness and chronic faintness.
I can’t walk for more than a few minutes before I feel myself start to faint and I get overwhelmed by light and noise which seem to torture my senses. Sometimes I can’t sit up without feeling like I will faint and have lost most of my independence because of that. The loneliness is brutal – I hardly see anyone and when I do, I can’t relate to their normal health and lives, and they can’t or don’t want to relate to mine.
When I’ve been able to work, I’ve had endless job applications turned down, people have turned their back on me at gatherings or moved their chair away when I’ve told them I have the illness. People (who are healthy and lucky) have told me to get a grip or that I’m not trying hard enough and that we make our own luck.
Most doctors don’t know anything about ME or how to treat it.
For those who have ME, like me, this attitude can be physically and emotionally disastrous. As these quotations demonstrate: ‘Quality of Life?' (What quality of life?):
Chronic Fatigue Sufferers (CFS) driven to suicide by loneliness and self-doubt, which arrive part and parcel with the disease itself. Although they are ill with a debilitating flu-like illness every day of their lives, neighbours and even friends and family insist they look “just fine.” – Dr David Bell, ME/CFS clinician and researcher, Faces of CFS, 2000.
'For these individuals, ME is a life sentence, but it is a life spent existing, not living'. – Carol Monaghan, UK MP, Hansard, 24 Jan 2018
'Fatigue is what we experience, but it is what a match is to an atomic bomb.' - Laura Hillenbrand, author of Seabiscuit and Unbroken, An Author Escapes From Chronic Fatigue Syndrome, NYT, 4 Feb, 2011
'An ME/CFS patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.' – Prof Mark Loveless, AIDS and ME/CFS Clinic, Oregon Health Sciences University, Congressional Briefing, 1995
'I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V.' – Dr Nancy Klimas, AIDS and ME/CFS researcher and clinician, New York Times, 15 Oct 2009
ME was first identified after 292 members of the medical and administrative staff at the Royal Free Hospital in London fell ill over a four-month period in 1955 with a debilitating, polio-like infectious illness. Symptoms included severe headache, lassitude, vertigo and nausea. Dr Melvin Ramsay, a renowned infectious disease specialist at the hospital, called the illness myalgic encephalomyelitis after pathology findings indicated it was a neurological disease causing inflammation of the brain and spinal cord.
Although the precise aetiology of ME is still unclear (and scarcely looked for), there is evidence that it is an immunological disease, triggered by an atypical form of polio and some other viruses. ‘There is immune activation, it is dysfunctional cells and a significant degree of malfunction of the immune system….I have no difficulty to say with great certainty that the immune system in ME/CFS is not working as it should.’ – Dr Nancy Klimas, ME/CFS researcher and clinician, interview, IACFS/ME Conference, 2011
Other researchers have found a range of abnormalities in ME patients such as immunological dysfunction and mitochondrial dysfunction (mitochondria are responsible for producing the energy in a cell). Here is just some of the latest research and definitions:
Symptoms
include ‘post-exertional malaise (PEM), cognitive dysfunction, sleep disturbances, orthostatic intolerance, abnormal thermal regulation, myalgia, photosensitivity, and neuro-immuno-endocrine dysfunction. Evidence also suggests abnormal brain function in ME/CFS, with microglial activation being studied directly or indirectly linked to metabolic changes and inflammation. ’
‘Too often, this disease is categorized as imaginary,” said Ron Davis, PhD, professor of biochemistry and of genetics. (From the link above) When individuals with chronic fatigue syndrome seek help from a doctor, they may undergo a series of tests that check liver, kidney and heart function, as well as blood and immune cell counts, Davis said. “All these different tests would normally guide the doctor toward one illness or another, but for chronic fatigue syndrome patients, the results all come back normal,” he said. The problem, he said, is that they’re not looking deep enough.
Now, Davis and Rahim Esfandyarpour, PhD, a former Stanford research associate; and their colleagues have devised a blood-based test that successfully identified participants in a study with chronic fatigue syndrome. The test, which is still in a pilot phase, is based on how a person’s immune cells respond to stress. With blood samples from 40 people — 20 with chronic fatigue syndrome and 20 without — the test yielded precise results, accurately flagging all chronic fatigue syndrome patients and none of the healthy individuals.’
‘In a huge study, researchers at Edinburgh University analysing blood biomarker data have found many differences between people with ME and healthy controls. The team also showed that these differences do not result from inactivity, which blows another hole in the deconditioning theory of ME/CFS. (The paper is a preprint, which means it hasn’t yet been reviewed by other researchers or published. The authors plan to submit their work for review and publication in a journal.)
The widespread dismissive attitude to ME can be blamed on two British psychiatrists, Colin McEvedy and William Beard. In 1970, 15 years after the Royal Free outbreak, the pair reviewed the 1955 medical notes and concluded that the patients had experienced mass hysteria because most of them were female.
This caricature of the weak, hysterical female has been parroted by psychiatrists, some physicians and the mainstream media ever since; the jeering term ‘yuppie flu’ appearing in the Press around the same time, aimed at ME patients for committing the crime of being mostly young, educated, professionally ambitious women. This also insultingly marginalises the male ME sufferers. (Multiple sclerosis similarly used to be dismissed as hysteria because it predominantly affects women. That was until advances in neuroscience forced medics to acknowledge it is a physical illness.)
Psychiatrists quoted in the MSM labelling ME as a ‘cultural phenomenon and metaphor for our times’ helped the trivialising term ‘Chronic Fatigue Syndrome’ to flourish and to replace the name ME. Australian artist Jodi Bassett, who developed ME at 19 and died at 40, argued that ‘CFS is an artificial construct created in the US in 1988 for the benefit of various political and financial groups’
‘If it were called chronic neuroinflammatory disease, then people would understand it. Until today nobody’s been willing to change the name, but now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage Aids, patients undergoing chemotherapy, or patients with multiple sclerosis.’ – Dr Nancy Klimas, AIDS and ME/CFS researcher and clinician, University of Miami, Press Conference, 2006
The ridiculously all-encompassing term allowed a wide range of different illnesses to be lumped together as the same disease, leading to unreliable biomedical research findings, although most researchers were not granted adequate funding anyway. For example, I know of a girl who was told that she had Chronic Fatigue Syndrome. In fact, private medical tests she had in America revealed that she had Lyme Disease.
Treatments recommended for so-called CFS included cognitive behavioural therapy and graded exercise therapy, in which a baseline for a patient’s physical capacity is established, then the time spent being physically active is increased by fixed amounts. Ironically it was a clinical study known as PACE, which aimed to justify these treatments, that inadvertently stopped ME being treated as a psychological illness. The health policy body Nice dropped CBT and GET from their ‘CFS’ guidelines and the NHS and CDC quietly stopped recommending them.
Dr Martin Scurr had been convinced ME is real by the evidence that, unlike with depression, exercising beyond the patient’s limits makes symptoms worse. Dr Melvin Ramsay had established this feature of the illness years before, without which the disease cannot be diagnosed as ME. But this fact had been obscured by decades of inappropriate psychiatric interference. Health researcher, Dr Keith Geraghty summarises: ‘It’s 30 years wasted, which is a long time in research terms. We could have discovered the cause of ME in that time.’
The consequence of this bigotry and neglect is psychological and physical damage to patients. In one notorious case, artist Sophia Mirza was sectioned under the Mental Health Act for insisting she had the illness and detained in a mental hospital. Two years later, aged 32, she died of kidney failure arising from the effects of ME. Severe infection of her spine was found in her post-mortem. Others forced themselves to exercise because it is not macho to give into ‘hysteria’. Once such was 54-year-old Labour MP Brynmor John, who collapsed and died as he left the House of Commons gym. More recently in the news, a 27-year-old woman who died from ME has been found to have been neglected by the health services.
How an ME patient was recently maltreated at a London hospital.
There are many more cases of maltreatment. How long will it be before this debilitating illness is taken seriously by the whole medical profession? How many more lives will be written off before this happens?
The only hope is that further investigation of the illness will be entrusted to proper scientists and not left to fester in the chaotic realms of pseudo-science and ignorance.
This is part one of Alice's article. Part two, on the neglect and maltreatment of ME patients, will be featured tomorrow.