Emily ble rammet av sykdommen ME (G93.3) i en alder av bare seks år. I forrige uke ga kroppen opp for sykdommen. Hun ble bare 30 år. Det har nå blitt igangsatt en støtteaksjon og underskriftskampanje «Support ME/CFS Patients: Dedicated Care Unit in Toronto Hospital Needed» for å bedre forståelsen av ME-pasienter spesielle krav til pleie. Dette angår oss alle, nettopp fordi sykdommen har distinkte karaktertrekk som gjør at institusjon og sykehus, samt mange nye ansikter, lite forutsigbarhet medfører forværring av ME-pasienters sykdomstilstand. ME-blogg har skrevet dette innlegget om bakgrunnen til Emily og noen har lest hennes bok.
Why This Is Important – viktig budskap!
People with ME/CFS represent a very 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 it’s entire population – including patients with ME/CFS.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neuro-immune illness that 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 beddridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comprable 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 it’s 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 can’t tolerate being in a hospital environment in order to get a g-tube inserted to feed them when they can’t 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.
People with ME/CFS often cannot tolerate sensory stimuli including touch, sound, smell and visual input as it gives them neurological overload. The need a very 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.
To relate the 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 morphine, often she would have to choose to forgo it’s administration by her mother when she was too sensitive to tolerate having her mum enter the room. Even this seemingly passive act could sometimes cause intolerable neurological overload to the point of having to refuse medication that was desperately needed, and Emily would have to remain with pain so severe it caused her to hallucinate.
I have had similar instances in hospital where a PSW asked if I was in pain. I was indeed, but I shook my head ‘no’ because I knew if I indicated ‘yes’ the nurse doused in perfume would come in talking about American Idol (and why wasn’t I interested?), asking questions about the pain and insist on taking vitals which was way more commotion than my brain could tolerate.
In memory of Emily Collingridge who died March 18, 2012 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 die or relapse from standard hospital care, but I really want her to be the last.
For the letter addressed to targets containing more details, please connect to: