Save ME/CFS Patients: Dedicated Care Unit in Toronto Hospital Needed
  • Petitioning Hon. Peter Tabuns, MPP

This petition will be delivered to:

MPP for Toronto - Danforth
Hon. Peter Tabuns, MPP
Premier of Ontario
Kathleen Wynne
Minister of Health and Long-Term care - Ontario
Hon. Deb Matthews, MPP
Nickel Belt MPP for NDP Health and Long-Term Care Issues
Hon. France Gelinas, MPP

Save ME/CFS Patients: Dedicated Care Unit in Toronto Hospital Needed

    1. Liisa Lugus
    2. Petition by

      Liisa Lugus

      Toronto, Canada

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.

Thank you.

For the letter addressed to Leona Aglukkaq, Minister of Health Canada 
http://www.mecfsassist.org/petition-for-mecfs-dedicated-care-unit.html

For the lengthy letter addressed to Deb Matthews, Minister of Health Ontario, sent March 31, 2012 detailing my hospital experiences: http://www.mecfsassist.org/1/post/2012/03/mecfs-dedicated-care-unit-initiative-letter-to-minister-of-health-ontario.html

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/

Emily's Appeal: http://www.mecfsassist.org/1/post/2011/06/emilys-appeal-for-those-severely-affected-with-me.html

Recent signatures

    News

    1. Reached 1,500 signatures
    2. Still Working on It!

      Liisa Lugus
      Petition Organizer

      I've been going through the expected bureaucracy which has been made more challenging as I've been unable to speak to make the necessary phone calls to the targets of this petition. I've asked various ME groups to help out with this initiative but they've declined to do so. I just wanted to let you know that I've not at all abandoned my efforts, though I have been waylaid. Keep the signatures coming! E-mails get sent to each of the targets every time someone signs which helps raise awareness of the unique needs of ME/CFS patients world-wide.

    3. Reached 500 signatures
    4. Tuesday April 3, 2012: Initiative will be discussed at NDP caucus meeting

      Liisa Lugus
      Petition Organizer

      All the e-letters sent with each of your signatures has brought the issue to the attention of NDP MPP Peter Tabun's consituency office! Rob, from the office said, "Yeah, we've been getting a lot of concerns about this". So to everyone - congratulations on getting our cause noticed! His office will forward all signatures and letters to the NDP MPP in charge of Health and Long-Term Care in Ontario, France Gelinas. I will add her to the list of targets as well, so her office will receive double copies.

      Next Tuesday April 3rd, the NDP will bring up the initiative for a dedicated care unit at their caucus meeting.

      It will definitely take a long, sustained effort to make this a reality, but keep it up, people are noticing our efforts and that's a great start!

      If you want to call Peter Tabuns' constituency office yourself, he's in Fridays and the number is 416-461-0233.
      ________________
      message left for ME/FM Action Network of Canada
      message left for MEAO; Ontario ME Association

    5. March 27: left message on Dr Alison Bested's VM 416-283-0007

      Liisa Lugus
      Petition Organizer

      I asked for her backing/collaboration as she is an ME specialist who co-authored the Canadian Consensus Criteria in 2003. She also works at the Women's College Hospital out-patient Environmental Clinic. She has been my specialist for over 12 years. One of our previous conversations focused on the lack of care for this population; she expressed that a sort of hospice was needed the way they exist for cancer and AIDS patients. If you want to join in asking her to back this initiative, give her private practice a call.

    6. Reached 250 signatures

    Supporters

    Reasons for signing

    • Colette Christianson GLEN ALLEN, VA
      • about 1 month ago

      Must be done everywhere.

      REPORT THIS COMMENT:
    • Marisa D'Ercole WEST END, AUSTRALIA
      • 2 months ago

      I have had CFS/ME for over 3 years - I know the pain and lack of support - It is the same here in Australia. Wishing you much success in this endeavour

      REPORT THIS COMMENT:
      • 4 months ago

      My Wife's got CFS, it's an Awful illness, because of it, every little thing of all Day Life is hard for her, even taking care of our Son, or even working...

      It's also so Frustrating, She has no Recreation, because it's too tiring.

      All that is just a little part pf the Consequences of this Illness, I don't tell about Pain and many Travel at Hospital for sometimes nothing...

      Keep on fighting against CFS!

      REPORT THIS COMMENT:
    • Peter Brassai GERMANY
      • 4 months ago

      Because of the evolution humankind, because of what we are!

      REPORT THIS COMMENT:
    • Fiona Craig SOUTHAMPTON, UNITED KINGDOM
      • 4 months ago

      This illness destroys WAY too many lives. We deserve the same level of care and human decency as any other illness receives!! Love to all.

      REPORT THIS COMMENT:

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