People with ME/CFS represent an exceptionally vulnerable population with unique needs when it comes to institutionalized care such as hospitalization and Long Term Care. For Canadian healthcare to be truly universal, it must include appropriate services for its entire population - including patients with ME/CFS.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neuro-immune illness that affects cognitive and physical functioning. It was found to affect 1.4% of Canadians in a 2010 CCHS study. Twenty-five percent of the afflicted are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to end-stage AIDS or end-stage renal failure. There is no known cause or cure, though autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord - confirming its' status as a neuro-immune illness. Some people improve with time while others are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.
To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' is quite typical.
Despite the ravages of this illness, it is one of the least funded in terms of research dollars, receiving slightly more funding per year in the US than Hayfever.
Many people with ME/CFS cannot tolerate the hospital environment as it currently stands, and end up dying or relapsing because they refuse to go to a hospital that cannot care for them properly. Conversely, many do go to the hospital and end up dying or relapsing because the care did not suit their basic needs. People in 'first world' countries should not be dying of malnutrition, starvation or dehydration at home just because they cannot tolerate being in a hospital environment in order to get a g-tube inserted to feed them when they cannot swallow; they should not become paralyzed or lose their ability to speak because hospital conditions depleted their sleep; they should not die a slow, torturous death because medical institutions did not care for them properly; they should not be forced to walk to dining areas or bathrooms when they need a wheelchair to avoid exacerbation of symptoms or severe relapse. Graded Exercise Therapy is not tolerated by the very severely ill. Medical experts need to realize ME/CFS patients are the experts of their own experience and that 'treatment' programs must be individually created by the team (which includes the patient) to suit the individual, and not just to suit the guidelines set out by the Ministry of Health.
People with ME/CFS often cannot tolerate sensory stimuli including touch, sound, being moved, smell and visual input as it gives them neurological overload. They need an unusually quiet, low-lit place just to keep whatever functioning they have. They need to avoid the regular hospital cleaning agents as patients usually also have Environmental Sensitivities and can lose functioning if a nurse haphazardly sprays some seemingly innocuous thing like Febreeze or Lysol. The genetics of their methylation is different and they simply cannot manage in a toxic environment without relapse. They suffer from insomnia and have a greater need for sleep than any other illness population; if they do not sleep, global functioning decreases and severe relapse can follow. People with severe ME/CFS are also in such a weakened state which, compounded with extreme sensory over-load, produces a situation where they often cannot bear to have visitors even sit with them. Consequently, having social and health care workers with anxiety, post-traumatic stress disorder or flighty behaviours service their needs is not appropriate. ME/CFS patients who are bedridden may only have a limited amount of times their body can be moved before relapsing; they cannot be serviced by someone who rolls them over, puts on a diaper, rolls them back, then realizes they forgot to put the soaker under neath, needs to roll them back again, etc. They need workers who possess a strong skill-set and who are grounded, responsible and experienced to provide their services so they do not relapse.
To relate the unique difficulty that people with severe ME/CFS have, I point to the case of Emily Collingridge (pictured above). Even when she was in horrendous pain and needed extra morphine, often she would have to forgo its administration by her mother when she was too ill to tolerate having her mum even enter the room. This seemingly passive act could sometimes cause intolerable pain to the point of having to refuse medication that was desperately needed, and Emily would have to remain in pain so severe it caused her to hallucinate. This is the kind of unique, debilitating symptom of severe ME/CFS that makes the sufferer unable to tolerate anything at their worst, leaving them to feel as if the entire realm of experience is an assault.
In memory of ME/CFS patient, activist and author, Emily Collingridge, who died March 18, 2012 just shy of her 31st birthday (in hospital), I ask that a dedicated care unit for people with ME/CFS be created in a Toronto Hospital so this group has a safe, healing place to go when they need Long Term Care, hospitalization or respite for themselves or their caregivers. Emily was not the only person with ME/CFS to relapse from standard hospital care, but I truly want her to be the last.
Dedicated care units for ME/CFS inpatients are needed in every major urban center throughout the world. I call upon Ontario legislators to lead the way by creating the first one. Please mandate that an 8-bed dedicated care unit be created in one Toronto hospital to start serving those with ME/CFS who are in need of in-patient hospitalization, rehab, respite and LTC.
For Emily's article on life with ME: http://www.mecfsassist.org/1/post/2011/06/from-6-to-30-a-life-with-me-by-emily-collinridge.html
Emily's book, "Severe ME/CFS: A Guide to Living": http://www.severeme.info/
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