“…the opposite of life is not death, it’s indifference” — Elie Wiesel
They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge.
The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) after a single symptom ‘fatigue’ to deliberately downplay the illness, despite ME having a WHO classification as neurological.
August 8 has been set aside to remember the suffering of these invisible severe ME patients.
In the UK, A Report of the CFS/ME Working Group (2002), presented to the Chief Medical Officer, estimated that almost 25% of people with ME/CFS are so seriously affected that they are unable to perform the most basic personal tasks and are confined to bed or spend the majority of the day in bed.
“Such patients feel particularly alone and isolated. The severity, complexity, and longevity of the illness are poorly understood,” the report said.
Severely affected are particularly vulnerable from lack of medical attention, understanding, and home attention.
Yet even as the report acknowledged the existence of serious ME/CFS patients, it downplayed the depth of suffering caused by the illness.
Here’s how UK-based The 25% ME Group describes serious ME: “Those with severe Myalgic Encephalomyelitis are either bedbound and/or virtually or completely housebound. They require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement.
“They are often too ill to use a wheelchair, or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.
Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.
Those with very severe Myalgic Encephalomyelitis experience profound levels of suffering and extreme symptoms, which can be life-threatening. Life may be reduced to basic survival, struggling moment by moment to breathe, eat, and drink, while enduring extreme pain.
“As well as severe disability, most have experienced financial hardship and relationship difficulties as a result of being seriously ill with a frequently misunderstood disease.”
The 25% ME Group is uniquely placed to talk about the nature of the illness. It is a charitable organisation managed entirely by volunteers (most of whom are severely affected by ME) and was set up to offer support services to those severely affected by ME, and their carers.
What is ME?
The 25% ME Group describes ME as an illness in which, “The most characteristic distinguishing feature is that symptoms are exacerbated by activity and sensory stimuli beyond the patient’s limitations. Activities that trigger flare-ups can be tiny by healthy standards, depending on the severity of the illness. Simple things like talking, watching a TV programme, or eating a meal, can cause an exacerbation.”.
Myalgic Encephalomyelitis literally means muscle pain (myalgia) with brain and spinal cord inflammation (encephalomyelitis). It is a complex neurological illness.
“Dysfunction has been found in all the major systems – neurological, immune, endocrine, cardiovascular, musculoskeletal, gastrointestinal, respiratory, and genito-urinary, which is why people with Myalgic Encephalomyelitis can have such a wide range of symptoms.”
According to the charity, the ignorance surrounding the illness is causing “much suffering to those with M.E., who have a double battle, not only with the disease itself, but also to get the illness taken seriously by those around them.
“There is an urgent need to raise awareness.”
We remember Sophia Mirza
August 8 is the birth date of Sophia Mirza, hence the reason for it being chosen as Severe ME Day.
Sophia was bed-bound with severe ME and was a victim of medical abuse. Her doctors refused to believe that ME was a physical disease and so she was forcibly taken from her bed by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.
Accounts of Sophia’s treatment, by Criona Wilson (Sophia’s mother) are chilling.
In July, the professionals returned – as promised by the psychiatrist. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital. Despite the fact that she was bed-bound, she reported that she did not receive even basic nursing care, where her temperature, pulse and blood pressure (which had been 80/60), were never taken.
Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned. The nurse asked me to cook for Sophia as the processed hospital food made Sophia more ill. Sophia also had to deal with all the nurses constantly going into her room and talking to her.
Sophia subsequently died of ME at the age of 32. Her post-mortem revealed widespread inflammation in the spinal cord (ganglionitis).
You can read more of Sophia’s story here.
We remember Emily Collingridge
On March 18, 2012, Emily Collingridge died of a respiratory arrest after a long battle with severe ME.
In this so-called ‘age of modern medicine’ her story is both tragic and confounding, a quite unbelievable narrative of institutional incompetence, disregard and abuse.
In Emily’s own words: “I found myself spiralling into a level of illness that was both shocking and overpowering in its severity. I had no idea that modern medicine could allow such suffering. I lost the ability to speak, to see, to move. I was doubly incontinent, often paralysed, tube fed and in unbelievable pain, only partially relieved by high dose morphine.
“My nausea was so extreme that it had to be treated with drugs normally reserved for patients undergoing chemotherapy. I could bear no stimulation, even though I couldn’t open my eyes and was in a blacked out bedroom, my eyes had to be covered at all times; I wore earplugs for 23 hours per day and someone’s mere presence in my room was like an assault. At times I didn’t recognise my own mother and was confused where I was.”
“The consultant put in charge of her care was unsympathetic, dogmatic and overbearing. He confessed to a limited knowledge of ME and yet, when she expressed her lack of faith in him, he replied that he was all that she had. During her eleven week stay she had to tolerate endless failed attempts to take blood from her tiny veins, painful injections and regular changes of sites for minimal sub cut fluids while she vomited several times a day.”
Emily was an inspirational ME advocate. Her own struggles gave her an insight into how desperately those with the illness in its most severe form needed practical, understanding advice. During an period of remission she researched and wrote ME, Severe ME/CFS: A Guide to Living (2010).
A final plea in Emily’s own words: “Please put an end to the abandonment of people with severe ME and give us all real reason to hope”.
Emily may have lost her personal battle, but her battle on behalf of all those still suffering from severe ME should not be ignored.
You can read more about Emily here.
We remember Alison Hunter
Another victim of the system is Alison Hunter. Alison died in 1996, aged 19, from complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease. Such complications are rare and only present in a severe subgroup.
Alison courageously fought ME/CFS for ten years and was an unstinting advocate for young people. She was the founding president of ME Young Adults (MEYA), established in 1992 at Royal North Shore Hospital, Sydney.
Again, despite her considerable physical distress, Alison suffered at the hands of indifferent and incompetent medical practitioners. Medical writer for the Sydney Morning Herald, Julie Robotham quoted James Isbister, the head of haematology at Royal North Shore Hospital, who treated Alison when she was a child and again when her illness returned in her teens.
“To be honest I felt helpless towards the end,” Isbister says. “On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of the terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me.”
Alison, he said, was, “like someone going through a concentration camp” – suffering terrible physical distress compounded by insults and inhumanity.
We remember Theda Myint
The lack of services for severe ME patients was underscored in the case of Perth (Australia) ME sufferer Theda Myint whose health deteriorated to the point where she considered suicide but repeated pleas for an in-home pain relief treatment were knocked back by the hospital treating her.
After a ten-year battle with the illness, on July 25 2013, just one day after her last medical appointment in which a neurologist advised her that she had tried all options available for pain management, Theda “euthanased” herself.
You can read more about Theda Myint here.
We remember the countless others
Sophia Mirza, Emily Collingridge and Alison Hunter are not isolated cases of institutionalized medical abuse towards ME patients. Thousands have died either directly due to the illness or from suicide as a result of suffering caused by the illness. Most had suffered some form of mistreatment, whether through medical incompetence, government indifference or social neglect.
The National CFIDS Foundation maintains an In Memoriam list of those who have died from ME.
There is a dedication to William Young, “who began the list and who compiled a great number of names on this list.”.
The majority of these patients did not have the medical care they needed; they suffered unremitting pain with little hope of relief or comfort. We acknowledge their suffering and hope that they have not died in vain.
Pictorial Memorial Wall — a patient remembers
In a sad but heartfelt tribute, ME patient Wendy Boutilier has compiled Tears for ME, a pictorial memorial wall of some of those who have lost their lives to ME. Each image tells a brief tale of those who lost their lives to ME.
A sample of Wendy’s work (6 images) is shown below. Tap the faded image to navigate the carousel.