Ministry of Health and Long-Term Care
Government of Ontario
80 Grovener Street, 10th Floor
Tel: (416) 327-4300
Fax: (416) 326-1571
I am writing to you about a severe lapse in care for the large population of Ontarians suffering from Myalgic Encephalomyelitis and ask that you take steps to ensure the health and proper care of these individuals.
People with ME/CFS represent a very vulnerable population with unique needs when it comes to institutionalized care such as hospitalization, rehab, respite 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 affects cognitive and physical functioning. It was found to affect 1.4% of Canadians in a 2010 CCHS study, including almost 400,000 people in Ontario. Twenty-five percent of the diagnosed are estimated to be severely affected, being bed-ridden 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 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' for years or decades is not.
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.
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.
I have been hospitalized and/or been in LTC care facilities in Ontario for over two years in my thirties. I had to leave the hospital via ambulance without being discharged to avoid imminent death. Hospital and LTC experiences almost killed me and led to severe relapses that I have yet to recover from.
In 2005, I was paralyzed, unable to speak, mostly unable to open my eyes and spent my day concentrating on getting liquified food poured into my mouth by my mother. I was admitted to Scarborough General Hospital in 2005 on the recommendation of my ME/CFS specialist, Dr Bested. I did quite well there, as I was in the ‘Acute Care for the Elderly/Neurology’ unit - a pretty low-key place with lots of care. Folks averaging 90 years of age recovering from strokes were my main companions, along with RNs and RPNs. Amazingly, no PSWs were allowed to work on the unit. (PSWs are health care aides that can get their designation with a 6-week course and an IQ of about 85, and they are taking over a lot of the hands-on patient care in Ontario hospitals.) Eventually, I relearned to walk at SGH, and my rehab was progressing very slowly, but steadily. Then, government guidelines dictated that I be moved to a Rehab Hospital, as I could not stay any longer at an acute-care facility. Unknown to me at the time, this transfer was to be my undoing, erasing all the gains I had made at the acute care facility. I had a very difficult time getting accepted to rehab because there were days on record where I was too ill to participate in physical therapy (even though I was making improvements), which was not acceptable for someone deemed as a psychiatric patient with no medical illness, thanks to a crackerjack psychiatrist who ‘diagnosed’ me a few months out of medical school. The previous 5 diagnoses of ‘Post Viral Fatigue Syndrome’ and/or ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ (all under the rubric of WHOs ICD-10 G93.3) somehow fell by the wayside, largely because my neurologist Dr Gardner-Maher stated that ‘people with that can walk’, which of course, is not necessarily true.
Finally, I was accepted to transfer to Bridgepoint Health. My preconceived ideas of what Rehab Hospital was all about caused me to feel like I’d just won the Lotto Super7. When I got there, I had my first major relapse within 2 weeks due to overexertion in Physical Therapy. My doctor (the Chief of Staff) maintained that ME/CFS probably didn’t exist as an illness as he’d never seen a case (note: as of 2006, it is illegal to hold this opinion in Ontario as a doctor). I relapsed severely a few months later from hospital chemical exposure from the cleansers they used August 1, 2005 for spring cleaning. To show the house-cleaning ethos at Bridgepoint, I introduce Joe, the cleaner on the unit who’d come to work at 7AM singing opera at the top of his lungs. He used to spray about 50-100 squirts of ‘pink stuff’ onto everything in the room to clean it. One day, a woman was there to clean instead of Joe; I noticed that she sprayed 3 squirts of ‘pink stuff’ into a large bucket-full of water and used that to clean the entire room. I asked why she did it like that and told her about Joe’s method. She got very nervous about this information and promptly left. So, I’m not too surprised that 5 kids super-cleaning my room with God-knows-what left me paralyzed, unable to feed myself, brush my teeth, wash my face or speak. I rallied a bit for a few months, unable to walk my usual 24 meters per day, but able to stand at times, transfer and be taken for showers on the commode. But, for all intents and purposes I’ve never walked since. Dr Malkin maintained that I didn’t walk because I ‘didn’t want to’ and the patient care manager told me I’d have to force myself to do my own feeding and tooth-brushing because the ‘PSWs were not intelligent enough to understand why [I] needed help with those tasks’. They had her whipped was the real truth. So, even though I was paying for my stay at this point, my mother had to come in every lunch and dinner to feed me and do my personal care. Finally when the manager was on vacation, my friends went to her replacement to discuss the issue; she put her foot down, making the PSWs give me the care I needed from that point forward.
Then, I got the privilege of being the youngest person ever, at age 34, to be transferred to the 6th floor: the purgatory for people awaiting nursing home placement. One woman was screaming ‘mama!’ 24/7, patients would wander into my room to either take my things, ask me to marry them or try to force feed me cheese. Staff on 6E dubbed the unit the ‘Zoo’. It was routine for PSWs to treat these elderly patients as non-entities: they would come into our room at night to party, talk on cell phones and sometimes even physically or mentally abuse those residents who would be unable to report them. I became chronically sleep deprived. One day, I recognized PSW Cavell from the night shift (her gossiping had kept me awake until 7 AM). I asked her why she didn’t let us sleep at night. Her reply, “Life’s a killer, baby. Oh you’re so pretty, it’s so sad. Nobody cares about these people [sweeping hand gesture], they’re all just going to nursing homes.” So, from this honest, narcissistic sociopath I had my answer. I complained to management, who told me she’d talk to the head night nurse Suzanne, which didn’t do a lick of good as Suzanna was one of the worst offenders. I continued to deteriorate and by November 2006, I felt I was dissolving into the ether. I left the hospital in an ambulance without being discharged to save my life. I have still not recovered from the relapse this hospitalization caused even though it’s been 6 years. I relapsed again upon my short LTC stay in 2008, experiencing transient paralysis and losing my ability to talk for several months. Even though I had clearly stated my needs to them, they did the opposite of what I had asked, thinking they could ‘cure’ me.
Hospital and LTC experiences have almost killed me and led to severe relapses that I have yet to recover from: becoming paralyzed again, unable to sit up, walk, or stand are the very severe consequences I suffered from my time in the institutions of Ontario’s Health Care System. At this point, I would likely choose the possibility of death instead of going through the tortures of hospitalization again, and that shows there is something very wrong with the current system.
This is indeed the situation that Lynn Gilderdale found herself in prior to her death at age 32 in 2005. She was bedridden and routinely hospitalized every winter for the infections she always caught. Before her last winter approached, she realized that she could not tolerate another hospital admission. Knowing that her infections were fatal without treatment, she nevertheless decided that she had to stay at home. She died of a morphine overdose prior to having to deal with the next bout of winter infection.
There are many hospital horror stories in regards to ME/CFS patients. Thirty-year-old Emily Collingridge was another ME/CFS patient who told me she relapsed severely after a previous hospital visit. I recently discovered that Emily died this past Sunday, March 18, 2012 in hospital. For me this was a call to action: too many ME/CFS patients die or relapse from not having appropriate hospital care that accommodates their very unique needs. Too many refuse hospitalization for this reason, and end up dying or relapsing at home because they can’t tolerate getting the care they need in a hospital setting. Conversely, others go to hospital and end up dying or relapsing from the care they receive. I believe the four previous publicized ME/CFS deaths in UK were due to starvation, malnutrition and/or dehydration as these patients were unable to chew or swallow. Lois Owens died weighing a mere 50-60 lbs because she could not take in nutrition, and apparently avoided hospital admittance for reasons known only to her family. Sophia Mirza died at age 32; she also could not take in nourishment and refused to go into hospital again because of her previous experiences which led her to relapse and never recover. Her death certificate was the first in the UK to state ME as a cause of death; the indirect cause was acute renal failure due to dehydration. A hospital visit done right could have given these young women the option of the nourishment they needed through inserting a gastric or naso-gastric tube.
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. They suffer from insomnia and have a greater need for sleep than any other illness population; if they don't 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 can't 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; the can't 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, consequently needing to roll them back agin, etc. They need workers who possess a strong skill-set and who are grounded, responsible and experienced to provide their services so they don't relapse. They need doctors to believe they have an organic illness.
To relate the unique difficulty that people with severe ME/CFS have, I point to the case of Emily Collingridge. 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 without further relapse. I wasn’t able to talk anyways, but she didn’t ‘get’ that and would keep asking the questions louder and more forcibly as if I were deaf instead of having sensory-input issues coupled with the most severe weakness you could imagine.
People with ME/CFS are extremely sensitive and must be cared for with these sensitivities in mind or they will relapse. Cleansers that they can tolerate must be used for room-cleaning, like industrial strength colloidal silver that is used at the Hospital for Sick Children. Staff in the unit where ME/CFS patients reside must use scent-free products, as is the practice in all public establishments in Halifax, Nova Scotia. The unit needs to be quiet: no pianos, televisions, radios, clowns jingling bells, strangers bursting in to play the violin, etc., as some patients are so sound-sensitive, they cannot tolerate even the sound of others breathing. Visitors must be quiet and their numbers must be limited (upon my admission to the Scarborough Hospital, General Division there were nineteen people in my 4-bed ward, even though there was a generous 2-visitor per person policy with a very visible notice up). The lights must be totally out at 9PM so that proper sleep is ensured; lights in the hallway must be dimmed by 80% if the patient chooses to have their door open at night. Efforts must be made to accommodate those who have a reversed sleep-schedule. Staff cannot yell and act boisterously on the floor, or play tricks on patients for their own amusement. Air purification units must be present for their ‘white noise’ and there ability to keep air clean; Aller-Air Air Medic is a great choice and is made in Montreal. The diet must be able to accommodate the many and varied sensitivities of people with ME/CFS, and as a default should start with being gluten-free, dairy-free, excitotoxin-free and free of artificial colours and preservatives. Some people with ME/CFS cannot tolerate being spoken to without relapsing; others cannot read or speak; this does not mean they are ‘out of it’ and automatically give up the right to direct their own care; it means they need specially-trained RNs or RPNs to administer it. They really need private rooms, and to have the option of signing a waiver to have the door closed at night and to refuse hourly night-time checks and vitals measurements so that they can sleep. Ideally, PSWs would not be allowed to work on the unit, and specially trained RPNs and RNs should administer care.
Myself, I have been taken off the CCAC’s LTC care list for one of the homes I applied for - the Arthur Meighan Manor - as they said they could not care for my needs once I stated them. I have not informed the other LTC home of my needs in fear that they would do the same. LTC facilities for those with ME/CFS need to be much more than just ‘live body storage’ as is unfortunately often the case. They also do not have enough staff to cater to someone with ME/CFS, who may need bed-baths done right because they can’t endure the shower (even in a trolly), or because it may take them several hours to get some watered down liquid chicken into their system. I have no home. I have applied for Assisted Living, though am not well enough to live on my own with attendant care (again, I will not tell CILT that, and hope I eventually improve), and am unsure as to when they can provide me a unit anyways. As you can see, I have fallen through the cracks to a place where I am worse off from Ontario’s Health Care services, faced with the very real problem of where to house my body so that it can actually heal; my elderly mother can’t do it indefinitely.
I hope I have adequately argued the need for a small dedicated care unit in a Toronto hospital for ME/CFS patients needing hospitalization (for whatever reason), rehab, LTC and respite. An eight-patient unit staffed by one nurse, with access to PT/OT services in one Toronto hospital would be a great start, and would not cost that much. By consolidating the patient group into one area instead of having it scattered throughout the GTA, and by creating a healthy environment, we will have better patient outcomes which means saving provincial monies in the long term.
I am willing to collaborate with your team to the best of my abilities to create such a unit in Toronto to make Healthcare in Ontario inclusive of this very vulnerable patient population.
Please respond to the above letter in general, and to the following three issues, specifically, in writing:
- when you will undertake the vital initiative to provided a dedicated care unit for people with ME/CFS in need of hospitalization, LTC, rehab and respite
- when you will mandate a scent-free/chemical-free policy to be adopted by all health care institutions in Ontario
- what are people with ME/CFS supposed to do in the meantime if they need LTC or hospitalization to get their care needs met if hospitals and LTC centres are refusing to meet these needs?