Knowledge Management Tools for Patients

Photo of a pill organizer set. Each day is a different colour. Monday is red, Tuesday is yellow, Wednesday is green, Thursday is blue, Friday is purple, Saturday is pink, Sunday is orange. There are four slots for each day. Morning, Noon, Evening and Bedtime.

First off, if you’re here looking for these tools, I’m so sorry. It means you have the kind of illness or disability where the doctors do tests and shrug. Or you have the shrug version of a diagnosis where they don’t actually treat you and you have to come up with your own treatment plan. Those with IBS, food intolerances, chemical sensitivities, fibromyalgia, CFS, ME, autism, hyper mobility and anything deemed as rare know what I’m talking about. Maybe you are going through the fun game of specialist hot potato where they throw you onto the next one while yelling, “Not me!” You also might live in one of the many countries where you simply can’t afford to visit a specialist or have to wait for years to get into a free one. Or they don’t have any in your area and you can’t afford to travel. So, my apologies for the lack of medical care and problem solving doctors you’ve encountered so far. Hopefully these tools can make it a little easier for you to get answers and Sherlock your way into some meaningful treatment plans and proper diagnoses.

I’ll be adding more to this because I have more tools that I’ve used to figure out how to maintain myself. I’ll announce them on twitter from @erin. These tools are meant to be free. They are not to be sold. Don’t be that guy.

Medical History and Summary

This is to correlate your data and history to get a big picture view of various events and tests that they might not have seen all in one place. If you have access to all your labs, you can include all your abnormal results. Write out the things that they have already tested and diagnoses abandoned. There are instructions on how to fill this out in the Word document. You should be able to open Word documents on Linux systems and Apple. I made this in Pages so the formatting will be off. Currently WordPress is not letting me upload Pages documents and I need to figure that out. I have included a PDF for those who need to have it printed for them and filled out by hand that contains no instructions as well as one with instructions for those with programs that let you edit PDFs. If you edit this in Word or Pages it will update the table of contents pages for you automatically.

Screenshot of a document. Has a blue line with Name: underneath. Then the title Medical History. Subtitle Prepared for: Your Doctor's Name. Month, Day, Year.
Screenshot of a document. Blue line on top with Name: underneath.
What you are trying to get them to understand or look into. Refer to the sections you want them to pay most attention to below and correlations you’ve made from looking at your data. This document is not like a symptom log. This is to correlate your data and history to get a big picture view of various events and tests that they might not have seen all in one place. You should definitely have both.
Two columns. Column one:
Current treatments
-Anything you do for yourself
-Treatments from professionals
-Things you avoid
-Stuff you think is making you better even if it’s not considered a treatment
Column two:
-Prescribed medications
Contains table with three headings and information underneath. 
Diagnosis/Symptom: Actual diagnoses	
Doctor: Who diagnosed you or list of doctors	
Date and details: High level details you want the doctor to be aware of including the dates. Anything you disagree with.

Happy International Disabilities Day

Woman spraying perfume cloud at herself in the shape of a skull and cross bones.

Happy International Disabled People Day! This year, the focus is on invisible disabilities. I’m Erin and I have an invisible disability collection. Today, however, I’m going to talk to you about Multiple Chemical Sensitivity, which is an Environmental Illness.

Environmental Illnesses are a group of disorders that are covered under Human Rights in Canada and in Ontario as a part of the AODA, where I live, but they are hardly ever included in accessibility plans. 

People who have MCS can react to a large variety of things, often along the Volatile Organic Compound groups, which can be naturally occurring (like in essential oils, tree sap, and pollens) or chemically processed. Usually there are natural based ingredients in the processed product that are the root of the issue, but they are ubiquitous and current labeling laws do not protect people with reactions outside the most common allergens. 

The most common sensitivity for people with what I call ‘beginners MCS’ is perfume and scented products. 

Features of MCS include migraines, hives, eczema, food sensitivities similar to MCAS, brain fog, dizziness, asthma, hair loss, psoriasis, nervous system control issues, muscle control issues, vomiting, diarrhea, breathing issues, emotional regulation issues, body temperature regulation issues, sweating, nose bleeds, and I’m sure other things I’ve forgotten because I ran the dishwasher during the day and the rubber casket hasn’t off gassed yet and it’s been a full year so far. My lung lesions are caused by chemicals but I had to ask multiple doctors before one gave me a CT scan to prove I even had them. 

There are only three treatments centres in Canada for environmental illnesses, and there are no environmentally safe hotels or places to stay if you can get an appointment at one, because hotels are not forced to be accessible. Most even spray ‘signature scents’ around their properties. It was over a year and a half wait to get into the Women’s College Hospital in Toronto as it is not properly funded. There are no official treatments. They try to get you seen by as many specialists as they can for the associated symptoms, but often people with MCS do not have traditional test results and then are left to deal with their disease alone, or forced to try out alternative medicines which are not covered under provincial healthcare and or insurance (should you have access to some). This leaves the MCS community vulnerable to scammy practitioners and commercialized health care fraud, which often makes their issues worse. Alternative practices that do help are not sanctioned as there has been no funding put into research or attempts at creating medicines. Promising medicines like Low Dose Naltrexone are not prescribed for symptoms related to MCS and you have to fight to even get a doctor who is familiar with the illness who will try to treat you. The knowledge management on this illness is so bad among healthcare practitioners that people are often prescribed anti-depressants and then gaslit about their symptoms. After having anaphylaxis while traveling internationally, a doctor in Toronto General Emergency told me there was no such thing as MCS and that I was having a panic attack. I went home and vomited foam on my own, with no blood tests to capture the moment. People with EMF sensitivity are the hardest hit with this issue out of the environmental illnesses. 

The only option is avoidance and for most people that means complete isolation and no health care, as hospitals, doctors offices, physical therapists and more do not have accessible facilities. Dentists and Dermatologists even often sell scented products and use essential oil diffusers, making them among the worst of the health care providers for accessibility. Especially now, with inaccessible cleaning products being broadcast as the only option by Health Canada (while safe peroxide based disinfectant alternatives and unscented soaps exist), we have been completely cast aside. Health Canada even warns about the dangers of indoor VOCs, yet has created a situation where they are unavoidable. My son has no access to his school and it will take a long time for the chemical soup to clear. Most people with MCS have to do many treatments to get these pervasive products out of drywall. There are off gassing protocols we use and they all have limitations. 

Pharmacies sell perfumes and often are the only places you can get flu shots. Canada Post locations are often located inside dry cleaners or perfume store pharmacies and do not offer accessible curb side services (even during covid). We do not have regulations on home dryer venting filtration to stop the onslaught of dryer sheet fumes that affect people and the environment. Airlines spray pesticides on planes and are not required to notify passengers. Many cleaning standards mandated by the government for food services are inaccessible, barring disabled people from working in entire industries. 

Once you’re pushed out of the workforce by inaccessible standards and unenforced policies you have the option of not having your disability covered under Canada’s Disability tax credit program, and fighting to be on provincial disability which is at below poverty rates. The assistive device program in Ontario doesn’t cover air purifiers, needed to maintain health. Air purifiers are also not tax deductible as health expenses, neither is infrared sauna use, which is one of the only suggested treatments. There are no safe homeless shelters, and most low income housing is not chemically accessible. There are no scent-free, low VOC long term care centres. Food banks are not accessible and cannot handle requests such as no nightshades, pesticides or foods without preservatives. We do not have VOC ratings on products, we do not have a scent-free path similar to gluten free paths for foods and there is often contamination. I need a back brace and I can’t find one I don’t react to, which is a huge barrier to health care. So, we are recognized in Canada but not supported, or treated. That stops today, and how we do that is by: 

  1. Funding research into treatments and capturing genetic information for those afflicted to add to the drug reaction database.
  2. Clearly stating accessible standards and not forcing disabled people to disclose their illness to get accommodations.
  3. Updating inaccessible workplace standards like for commercial kitchens.
  4. Creating a VOC rating standard for products as a part of environmental carbon emissions legislation.
  5. Creating a scent-free food chain.
  6. Creating accessible housing.
  7. Funding disabled people who can’t work and providing them with the tools they need to get well, like knowledgable doctors, air purifiers and grocery cards to purchase their own foods. 
  8. Hiring people with MCS to create your policies and solutions. 

Have a great day, ditch the perfume if you’re going out, wear your mask and stay safe. 

Are cleaning products making you sick?

If you’ve ever gotten a rash from a face product, or had an adverse reaction to a shampoo, gotten dizzy walking through the war zone of smells in a perfume department, or had issues shopping in the laundry aisle you likely have a chemical sensitivity. You may have also been told that you are overreacting, it’s just a mild irritation, or you just ‘don’t like the smell’. The provincial Environmental Health Clinic (EHC), a collection of doctors, put out a report in 2010 (updated in 2011) that says environmental sensitivities (ES) and multiple chemical sensitivities (MCS) are legit. There was no funding and these doctors worked basically for free. They are real doctors, who aren’t trying to sell you anything. Also, these medical issues have been recognized as disabilities in Ontario as of 2000 and Canada’s human rights commission as of 2007, plus they’ve been studying this for 50 years. The Canadian Community Health Survey reported (in 2010–11) that physicians diagnosed 2.4% of adults over 12 years old and 3.4% of women had been diagnosed with ES-MCS. A whopping 1/3 of the Canadian population self reported as being chemically sensitive to fragrances and perfumes (including many who have asthma).

The EHC report claims, “ The science of toxicology has evolved substantially and there is a move away from “physical” versus “psychological” models of disease/illness to the multiple determinants of health model utilized by the World Health Organization (WHO). There is also increasing understanding of unique responses to low doses.” But not in my experience. Last year, I had to go to Toronto General emergency after going through customs and immigration at Pearson airport (like getting punched in the face by chemicals) and while trying to explain what was happening, I was told I was merely having a panic attack and had to demand to be examined. I was told that low levels of X in my system would not cause my reactions and the intake doctor didn’t believe in MCS.

As of 2011, there was no diagnostics code for ES-MCS, so doctors working on it could not bill for it. As it’s been a disability in Ontario since 2000, what?

Not funding ES-MCS is costly

The provincial Environmental Health Clinic in Ontario study of 128 patients found that 68.8% had to stop work. If we make an assumption and take that to the 3% of the population that have been physician diagnosed with ES-MCS as of 2011 (again, likely more now), at our current population, that’s 1,098,782 people who are heavily reacting to chemicals and 755,962 who are unable to work. That’s a lot of disability and social aide for the country to dish out because people can’t get diagnosed early on and our public spaces are making them worse. Further, this study found patients with MCS/fibromyalgia/chronic fatigue visits in Ontario to GPs were 10.7, and to other physicians were 13.7. This was much higher than other areas of Canada, where the numbers were 2.9 and 0.79. So if we use the 2013 doctor costs (assuming non-GPs are specialists), that’s $1591.60 annually in Ontario each person. At 3% of the population of Ontario, that’s $419489.52 annually. And may we just guess that pollution is the cause of a lot of that as we are one of the filthiest provinces?

Won’t someone think of the children?

Some children are being misdiagnosed with ADHD and other learning disabilities because they cannot focus in their classrooms due to environmental exposures. Chemical sensitivities have also been known to make children with neuro diversity worse. Dr. Claudia Miller of the University of Texas who has named MCS, Toxicant-induced Loss of Tolerance, spoke to the Autism Society on this topic in 2012. She suggested that the only way to test a child for severity of learning disabilities was to have a clean room free of chemical substances. Instead we have schools full of cleaning products that need MSDS (Material Safety Data Sheets).

By law, schools have to accommodate kids with MCS who are diagnosed but we do not have a paediatric ES/MCS clinic in Ontario and The Environmental Sensitivities clinic in Toronto only sees adults. My daughter is currently going through the long wait for ‘learning assessments’ through the Toronto District Public School Board (TDSB), and she has a chemical sensitivity for certain. She has nose bleeds if around certain cleaning products for extended periods, she gets rashes, dizzy and flushed cheeks. The TDSB recently announced a budget increase for disabled students, which is good. To support them, we also need to change to scent free non-toxic cleaning products (which are cheaper) and then roll out a scent free policy in all of our schools. I’m sure the teachers would appreciate all the help they can get and the kids deserve a place they can think. How many kids are being unnecessarily medicated for something that could be mitigated by environment? This is an unacceptable oversight. Especially when there have been safe school guidelines since 2010.

We need health care reform

The fact that doctors don’t even know the list of symptoms to send you to a speciality clinic is appalling. Having to change doctors because their office was making me sick and they didn’t accommodate my MCS, was very depressing. We have a HUGE knowledge management problem in our health care industry. Also, due to the lack of funding to the mere THREE clinics that exist nation wide, it’s a 13 month wait to get into the Women’s College clinic and you have to do a 27 page intake. When your brain is fogging from chemicals, that’s a beast to attempt. People from out of the city and province have to travel to Toronto and find accommodations, or to Nova Scotia, and the only paediatric clinic is in Alberta.

Health care reform is not something to wait on. It costs us money, people get increasingly ill waiting for doctors and specialists take far too long to get into. People who are worse off cost more to treat and then they can’t work, which costs even more. In a large city wait times are much less. We have no standard of care, and clearly medical studies aren’t getting passed onto GPs and walk-in clinic doctors. This system encourages patients to seek non-medical advice and for purchase ‘cures’ pop up while people try to manage their symptoms, not knowing the answers. They bleed money on procedures they hope will relieve their symptoms even a little, potentially harming themselves more in the process.

We need a call to action for scent free public spaces

All medical facilities I’ve been to here are coated in chemical cleaners and my reactions are much worse there. Emergency rooms are not scent free, even though they claim they are. I now have the sense of smell of a drug-sniffing-dog, I can tell. With 1/3 self reporting and 3% diagnosed, not having safe hospitals and schools feels like a very large class action suit. I can’t even use the subway because it’s 10x more polluted than the outside

Non-toxic cleaners like apple cider vinegar and water, baking soda and scent free non-toxic cleaners end up costing me less than the heavily toxic cleaners. I’m confident that if the cleaning products in all schools, community centres, libraries, government buildings and hospitals were switched out, there would be a large cost savings.

We need public facility reform, similar to no smoking laws. We need a salt water municipal public pool in Toronto. Employees should be able to go to work safely. Kids should be able to learn safely. There needs to be standards in housing development, especially socialized housing. There are obvious fixes that will have long term health and financial benefits. All the studies have been done and approved, why haven’t the changed been implemented?

Let’s not suffer in silence

To all the people not getting referred, or being told that it’s nothing — don’t wait. I know it takes a lot of energy you don’t have, but print the studies, bring them to your doctors. If the Canadian medical system will not do the outreach, you need to for your own sake. We’re all being too polite and Canadian about this. We don’t have to be patient, they have to fix it. We pay the government, and doctors with our taxes. They are our employees. Our employees are mismanaging our finances and health and it’s time for them to do something. Call your MPs, all your local representatives. We will save money and be healthier together.


Sign up as a member at if you’re in Canada and have your voice heard.