Province of Ontario Interim Report on ME/CFS, FM, and MCS/ES

The Province of Ontario’s Ministry of Health and Long Term Care’s long awaited Environmental Health Task Force Interim Report has finally been released!

“We found that, throughout the health care system and in society at large, there is:

•a lack of recognition of the seriousness and severity of these conditions
•a profound shortage of knowledgeable care providers
•a dearth of clinical tools to support and guide care
•a discouraging shortage of services and supports for people living with these conditions
•an absence of support for family caregivers.

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. …

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need.”

From the press release:

Improving Care for People Living with Environmental Health Conditions

Release of Interim Report Looks at Hard-to-Diagnose Conditions

September 29, 2017

Ontario is releasing a report that recommends improving the understanding and recognition of environmental health conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and environmental sensitivities/multiple chemical sensitivity.

The interim report, Time for Leadership: Recognizing and Improving Care, was produced by the Task Force on Environmental Health.

Its recommendations focus on three key areas:

research, education and care to improve supports for people in Ontario living with environmental health conditions.

The province is currently reviewing the task force’s recommendations and is renewing the funding for a fellowship in Clinical Environmental Health at the University of Toronto to expand clinical expertise in this domain.

The province also plans to provide support for a group of experts to develop consensus on clinical case definitions, to help health care providers and their caregivers better diagnose and understand these conditions.

THE CASE FOR ACTION

ME/CFS, FM and ES/MCS are life altering conditions. They have a drastic impact on people’s health and quality of life. In some cases, the symptoms are so severe as to keep people housebound and even bedbound.

From the Executive summary:

The more than half a million Ontarians of all ages living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and environmental sensitivities/ multiple chemical sensitivity (ES/MCS) face overwhelming barriers accessing high quality, appropriate patient-centred care.

Despite the large number of people affected by these devastating, life-altering medical conditions, there is a discouraging lack of: recognition and understanding of their impact and severity; knowledge about their underlying causes and treatment; effective clinical care pathways; and knowledgeable care providers.

People struggle to get the care, support and accommodation they need.

They also face significant stigma and discrimination within the health care system, in the workplace and in society at large.

The Task Force on Environment Health was established by the Ministry of Health and Long-Term Care to provide advice on how to overcome these gaps in knowledge, care and attitudes.

In the first year of its three-year mandate, this group of expert clinicians, patients, researchers, advocates and representatives from health system organizations has identified a number of early concrete steps can be taken now to establish the foundation for an effective, patient-centred system of care.

 

1. Change the conversation and increase understanding and recognition of these conditions

Recommendation #1.1:

Make a formal public statement recognizing ME/CFS, FM and ES/MCS

 

Recommendation #1.2:

Establish academic chairs focused on ME/CFS, FM and ES/MCS

 

Recommendation #1.3:

Modernize the K037 fee code to include all three conditions

 

2. Develop a common understanding of ME/CFS, FM and ES/MCS

Recommendation #2.1:

Develop clinical case definitions and clinical practice guidelines to support standardized, high-quality, patient-centred care.

 

3. Lay the groundwork for a patient-centred system of care

Recommendation #3.1:

Establish detailed clinical care pathways to support the development of an evidence-based system of care.

 

Recommendation #3.2:

Make hospitals safe for people with ME/CFS, FM and ES/MCS

 

Recommendation #3.3:

Make long-term care homes safe for people with ME/CFS, FM and ES/MCS.

 

4. Increase the number of knowledgeable providers

Recommendation #4.1:

Continue to fund the Enhanced Skills Program for 3rd Year Residents in Clinical Environmental Health.

 

One of the greatest barriers to research on ME/CFS, FM and ES/MCS is stigma.

Task force members are aware of anecdotal reports of clinicians being unwilling to manage patients and scientists avoiding research on these conditions because of the scepticism and controversies surrounding these illnesses.

Although there is a biological basis for these conditions, patients are often told that their problems are psychological. Provider attitudes contribute to the stigma and increase patients’ isolation and stress.

Symptoms of these conditions can be triggered by environmental factors, such as bright lights, noise, scents and low levels of chemicals and other substances.

That means that, for many people with these conditions, their housing is often environmentally unsafe or it can exacerbate their symptoms.

To manage their illness, people often have to make significant changes to their home environment, diet and daily activities.

Finding safe affordable housing can be extremely difficult if not impossible.

As is often the case with chronic conditions, finding the resources to live well can be expensive, demoralizing and isolating.

Many people with ME/CFS, FM and ES/MCS cannot work and so their incomes drop.

Living with these debilitating conditions for years can result in depression, poverty and even homelessness.

Because the traditional health care system has little to offer in the way of care or treatment, people often turn to uninsured treatments and supplements (e.g. naturopathic care), which they have to pay for out of pocket, exacerbating the financial impact of their illness.

Given the chronic and often severe nature of these conditions, the caregiving burden can take a major emotional, mental, physical and financial toll on the family.

In a very short period of time, caregivers and families can go from full careers and active social lives to a state where their finances, shelter and food security become precarious.

Families often face these challenges in virtual isolation. There are no sources of information or support for family caregivers.

In some cases, family caregivers may not believe these conditions are real and/or face the stigma of having a family member with these illnesses.

 

Because of the lack of recognition of these conditions, people are often denied insurance benefits, social services, social supports and personal support carers.

In many cases people cannot obtain supporting letters from their physicians and specialists to access resources and assistance.

As a result, they often struggle to get the accommodations they need (e.g. quieter, more dimly lit spaces; scent free areas, use of non-toxic cleaning products) in their housing, at work or in emergency departments.

Scepticism on the part of friends, family, health care providers and employers about the legitimacy of their symptoms and environmental triggers can lead to isolation, job loss, homelessness and poverty.

Isolation and these other social determinants of health can, in turn, lead to other health complications that require more medical care and interventions.

More Detailed Snippets from the Report:

RECOMMENDATIONS


1. Change the Conversation

Despite compelling scientific evidence that ME/CFS, FM and ES/MCS are real, these conditions have not been adequately recognized by health policy makers, health care professionals and their educators, employers, or society at large.

This lack of recognition has been the biggest single barrier to improving care and support for Ontarians with these conditions. It helps explain why the recommendations of so many previous reviews have failed to gain traction and be fully implemented.

 

Leadership

To change the conversation, reduce the stigma associated with these conditions and gain the recognition required to improve care, we need leadership at the highest level in our health system. We need the Minister of Health to draw attention to the scale and depth of suffering these conditions cause.

 

Recommendation #1.1


Make a formal public statement recognizing ME/CFS, FM and ES/MCS

The task force recommends the Minister of Health and Long-Term Care make a statement recognizing ME/CFS, FM and ES/MCS.

The statement should reinforce the serious debilitating nature of these conditions and dispel the misperception that they are psychological.

It should also include a commitment to improve care and education, develop a system of care for people living with ME/CFS, FM and ES/MCS, and provide support for caregivers.

Recommendation #3.1

The task force believes strongly that Ontario must seize the opportunity provided by the code and the AODA to fully recognize and address the disabilities arising from ME/CFS, FM and ES/MCS.

The task force understands that widespread recognition of the debilitating nature of these conditions – which should improve access and accommodation – will take time. In the meantime, the task force has identified a number of concrete initiatives that can have an immediate impact, using existing health system resources and policies.

As a first step, the task force is focusing on hospitals and long-term care homes: settings that can be challenging for Ontarians living with ME/CFS, FM and ES/MCS.

We believe that, with the right policies, practices and attitudes, a hospital or long-term care home can provide patient-specific accommodation that is designed to prevent reactions, minimize discomfort, and build trust with patients and families.

While these strategies can be difficult to enforce, we know from the experience of some health care settings (see box) that, with the right leadership, they can be implemented successfully.

There are a number of simple steps that a hospital or long-term care home can take to be more accessible and accommodating and to balance patient safety (including the need for infection control) with accessibility and accommodation.

For example:

implement and enforce a rigorous fragrance and chemical avoidance policy

ensure all employees are aware of the need to accommodate patients or residents with these disabilities

create awareness of measures such as adjusting lighting and sound, and developing a care plan that supports care with minimal touch

provide patient room signage to eliminate the need for patients to continuously advocate for their needs while receiving care

develop procurement and contractor policies to purchase low-emitting furnishings and materials, use low or no VOC paints, and adopt cleaning supplies that meet provincial standards while also being low or no scent.

Recommendation #1.3:

Modernize the K037 fee code to include all three conditions

The task force recommends that the ministry re-initiate the process to modernize the Ontario Health Insurance Program (OHIP) fee code K037 – in collaboration with physician and patient experts – to ensure it recognizes all three conditions.

… An individual’s health experience is also affected by other factors outside the health system, such as access to safe housing and working environments, flexible employment, income supports, social support and more. …

 

Recommendation #3.1

Establish detailed clinical care pathways to support the development of an evidence-based system of care.

The task force recommends that the ministry provide funds to support the development of clinical care pathways for people with ME/CFS, FM and ES/MCS and map out an appropriate patient-centred system of care for Ontario.

Recommendation #3.2

Make hospitals safe for people with ME/CFS, FM and ES/MCS

The task force recommends that the ministry work with its partners and with expert patients, caregivers and physicians to ensure hospitals comply, as quickly as possible, with relevant accessibility and accommodation legislation.

As a starting point, the ministry should work with the Ontario Hospitals Association (OHA) to build on relevant prior work, including the Quinte Healthcare Corporation policy on Multiple Chemical Sensitivities and the guidance for hospital staff contained in Marshall, LM, Maclennan JG. Environmental health in hospital: A practical guide for hospital staff. Part I (pdf) Pollution_Prevention, Part II  (pdf) Environment-sensitive Care (2001) (documents added from the files of SStP, not linked from the report).

(I didn’t see anything about 1st responder and ambulance accessibility there, which is also critical, because if we can’t make it to a hospital alive due to exposures encountered on the way, having an accessible hospital is moot)

4. Increase the Number of Knowledgeable Providers

The key challenges will be:

providing concise and clear information, including relevant and practical tools, for primary health care providers

making changes to medical and nursing school curriculum at all levels

building interest among practicing health care providers and overcoming the lack of recognition and respect for the conditions

improving general public awareness.

 

Primary Care Provider Education

Patients’ first point of contact is their primary care provider. From a patient experience perspective, it is critically important that primary care providers be able to recognize the symptoms of ME/CFS, FM and ES/MCS and respond appropriately.

There is currently no consistent academic education on these environmentally linked conditions for primary care physicians or nurses in undergrad or specialized training (i.e. family medicine specialty, nurse practitioners) and limited learning opportunities for professionals already in practice.

To raise health care provider awareness of and build interest in specializing in these environmentally linked conditions, Ontario needs a comprehensive education strategy that would include:

providing basic awareness and information about the conditions to all physicians and nurses in training as well as those in practice

ensuring students who specialize in family medicine or primary care nursing develop the skills and competencies required to know the questions to ask at intake and how to take an environmental exposure history (2015 pdf added here by SStP)

 

Public Awareness

To enhance public recognition of the conditions, reduce stigma and improve care, the education working group has identified key audiences to target with awareness messages including:

the general public

medical specialties strongly associated with the conditions including rheumatology, internal medicine and endocrinology

employers

social services

housing providers

family caregivers.

 

On page 3 of Appendix 4 Evidence Brief: White Paper  there’s a footnote that states “ES/MCS is intended to also include sensitivities that have been reported to electromagnetic fields, although the task force will not otherwise address potential sensitivities to electromagnetic fields as a distinct topic.”

 

There’s more, but you’ll have to download and read the Report to see it all.

http://www.health.gov.on.ca/en/news/bulletin/2017/hb_20170929.aspx

In Phase 2 of its work (now underway), the task force will focus on developing both professional and public education, and a person-centred system of care for people with ME/CFS, FM and ES/MCS: one that is accessible and includes quality primary care, relevant specialised services, timely diagnosis and assessment as well as access to necessary support services such as housing, employment and family supports.

If you live in Ontario, please contact your MPP to let them know about the report and ask them to officially support the recommendations. Please  also add that ambulances and first responders  need to be accessible too, so that we have a safe way to get to a hospital without exacerbating whatever condition would take us there, and that in the meantime, without access to services away from home, we need access to safe and appropriate medical care and support at home.

If you live elsewhere in Canada, please share the report with your provincial representatives and ask that they too support the recommendations in your province.

If you live elsewhere, why not share it with the elected reps  in your area too?

 

The more people know about us, the sooner things will change!

.

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8 responses to “Province of Ontario Interim Report on ME/CFS, FM, and MCS/ES

  1. Something you have left out is the chemical sensitivity to the many medication the Drs. try to put us on. If we won’t take them then they stop working with us. I have found a few wonderful Drs. who will work with me, but their knowledge is limited in how they can help me and others. Many feel they to not have to accommodate me and kick me out of their offices or just make fun of me especially nurses. Hospice has been horrible to work with with exception of a few. They feel they don’t have to accommodate me. I am told that I shouldn’t have to expect that people will come with no fragrances on them.

  2. I know people who can’t find “safe” life saving medicines because the ingredients of current versions don’t agree with them, there’s no testing to see what would work (or wouldn’t work to avoid more adverse effects), and no way to get safe versions compounded for them…

    I can’t take any pharmaceutical meds, and have to rely on whatever I can find from nature or homeopathy (if I can get a consult with a qualified practitioner, which is hard to do when housebound and poor), and even then, finding remedies that aren’t fragrance or pesticide contaminated in the supply chain is nearly impossible.

    There were great efforts made to create a law about improving adverse effects reporting, but it looks like Health Canada is now working with the pharmaceutical industry to ‘relax’ those efforts, and minimize the kinds of reporting that are needed:

    Health Canada ‘gutting’ law to detect dangerous medicines, with possible deadly consequences, advocates warn

    “Health Canada has written a guidance document which basically … is the exact opposite of the intent of Vanessa’s Law,” Young said in a recent interview.

    As is the case with many bills that pass through Parliament, when Vanessa’s Law was passed in November 2014, some of its provisions were immediately enacted, while others requiring new regulations were not.

    One fundamental pillar of the law – that every serious drug reaction occurring at every health-care institution in the country is reported – is being gutted, he says.

    “Getting that evidence is absolutely crucial to keeping patients safe,” Young said. “Every serious adverse drug reaction can provide very important data that can lead to saving patients’ lives.”

    It appears, however, as though Health Canada is poised to regulate only acute-care hospitals – rather than including long-term care facilities and clinics, for example – and require them to report only “unexpected” adverse reactions to prescription drugs, rather than all.

    In other words, the reports won’t include anything the drug manufacturer includes on the drug label, which often feature a laundry list of symptoms and reactions.

    “If a drug is harming patients, if it’s an unsafe drug, you want to get all serious adverse drug reactions reported as early as possible. And the proposal made under [Health Canada’s] white paper would make sure you don’t.”

    It is widely known, however, that adverse drug reactions are wildly under-reported. A 2015 article published in the Canadian Medical Association Journal, specifically addressing Vanessa’s Law, stated that less than five per cent of adverse drug reactions in Canada are reported.

    “Extremely serious reactions are under-reported in Canada by as much as 96 per cent,” three medical doctors wrote in their commentary, titled, Can reporting of adverse drug reactions create safer systems while improving health data?

    Clearly, says Young, there is a problem with the current system.

    https://globalnews.ca/news/3674979/dangerous-medicine-prescription-drugs-vanessas-law-health-canada-gutting/

  3. Right now, every aspect of our “health care system’ would kill me (if not immediately, then really hasten my demise with great suffering)… because they aren’t doing anything that would ensure safe access for me, including fragrance-free, non-toxic home visits to monitor my health or address problems as they come up and get compounded… They can’t even find a safe for me to see doctor who will do home visits…

    I am not alone in experiencing this complete exclusion from services…

  4. This is a wonderful article and thank you for encouraging much needed political action. I’m concerned that EHS (Electromagnetic Hypersensitivity) isn’t specifically included in this excellent article. ES is the term used for environmental sensitivity. There are many kinds of environmental sensitivities people experience and one of them is EHS. EHS can be quite debilitating for some people who are extremely sensitive and who experience “microwave radiation sickness” from microwave, WiFi signals. Please revise if possible, so people are aware that there is a growing number of people experiencing negative, biological symptoms from digitally pulsed microwave radiation from wireless signals from cell towers, cell phones, wireless access points/hubs, blue tooth and other wireless devices. Thank you kindly. 🙂

    • Hi Shelley, I’m not sure why the task force only gave EHS a nod in a footnote. The Environmental Health Clinic in Toronto does diagnose EHS and has done numerous educational presentations about it. I’m pretty sure if things progress, it would be included in the health and dx paradigm, given their understanding, and that the new doctors go through the clinic for a good portion of their training. There’s quite a bit of overlap here, and EHS is definitely a part of that.

  5. While the task force didn’t address EHS, the Environmental health Clinic does:

    WCH’s Dr. Riina Bray speaks at a Montreal conference

    …”The clinic, which is the only one of its kind in Ontario, was established by the Ministry of Health and Long-Term Care to be a provincial resource in promoting environmental health and also improving healthcare for people with conditions linked to the environment, which include electromagnetic hypersensitivity.” …

    http://www.womenscollegehospital.ca/news-and-events/Connect-2016/WCHs-Dr.-Riina-Bray-speaks-at-a-Montreal-conference

  6. This needs to happen everywhere, just like smoking has been banned almost everywhere (and they aren’t finished with that yet either – we need the right to breathe clean air, not the right to pollute it)! While they don’t mention laundry products in the intro paragraph, they DO say that anyone with scented clothes will be asked to leave or change

    No Scent Policy

    The following is a Kingston General Hospital Policy:

    Principle

    Due to health concerns arising from exposure to scented products, the organization has instituted a scent-free policy in an effort to provide a healthy and safe working, learning, teaching, and caring environment for staff, students, patients, and visitors alike.

    We care for and work with many individuals with life long illnesses who can experience significant negative health effects when exposed to fragranced products. We will endeavour to accommodate the health needs of scent-sensitive individuals in our environment.

    Applicability

    All persons who work in, attend as patients of, or visit Kingston General Hospital, have an obligation to help maintain a scent-free environment.

    No Scent Policy

    All persons who work in, attend as patients of, or visit Kingston General Hospital, have an obligation to help maintain a scent-free environment.

    Policy

    All staff, patients, and visitors will:

    Refrain from wearing cologne, perfume, scented personal care products such as body lotions, sprays, and powders, scented deodorant and hair care products, and aftershave lotions; avoid bringing in scented flowers including but not limited to: Freesias, Lilacs, lavenders, lilies (including day, tiger, Easter Lilies, lily of the valley, and star gazers), Hyacinth and Peonies; refrain from bringing scented air fresheners or personal hand lotions from home.

    Fragrance –free hand lotions are available at the hospital.

    Staff will advise all persons entering the hospital about the scent-free policy and educate all persons entering the facility about the health effects of scented products.

    Patients who are wearing scented products may be asked to wash and/or change their clothing.

    Visitors who wear scented products will be asked to leave.

    Security will be involved as needed.

    Staff who are wearing scented products may be asked to leave the area, wash, and/or change their clothing.

    Staff who show disregard for the scent-free policy will face appropriate disciplinary action.

    Suppliers will be notified of our policy and our mandate to purchase scent free products wherever possible.

    The public will be advised of our policy through the media, and other venues such as appointment requisitions, and scent free signage posted throughout the hospital.”

    http://radiology.queensu.ca/education/radiology/handbook/scent

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