More than 750,00 sick Ontarians – 1 in 6! – are without healthcare for devastating illnesses.

Tell Ontario’s Minister of Health and Long Term Care, Christine Elliot, that she must implement the recommendations of the task force report, CARE NOW: An Action Plan to Improve Care for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS).

 

Today, I’m going to share with you a letter I wrote, as part of an initiative by several groups and collaboratives who have been working for the last decade to get Ontario’s Ministry of Health and Long Term Care to establish services for the more than 740,000 people who, in 2016, have been identified as living with the above conditions. Of these, more than half – more than 400,000 in fact – have environmental and chemical sensitivities. If you can help – read on – please, please do.

I bet you had no idea about the massive number of people living in this province with the three devastating, environmentally-linked and complex chronic diseases whose acronyms are ES/MCS), ME/CFS and FM (Fibromyalgia), many with two or three of these at once. Yet such were the findings of the 2016 Canadian Community Health Survey (Statistics Canada). With annual increases in the tens of thousands for each of the last 10 years, projected after 2016, that figure may well have surpassed 900,000 by now.

No-one knows about these figures, because though Ontario has a massive, ballooning, public health crisis, government after government has refused to acknowledge or address it. It’s so big, it affects all of us directly or indirectly. Every day, more of us succumb. And every day, more of us have to find that we are completely without health care for our most difficult and painful health conditions, despite the guarantees of universal health care.

I repeat: our system has no capacity – no recognition, no education, no training, no services, no facilities, no accommodation, not even billing codes – for hundreds of thousands of extremely sick people. So, it also fails to provide prevention or early detection, it does not halt deterioration or provide treatment to ameliorate the worst effects of the diseases. What it does do – and this is well-documented – is extensive harm to patients who still go to that system for care, since there is no other.

For those who develop these illnesses and for their unsupported, overburdened families this is a nightmare scenario of longstanding.

For the province as a whole, it means 1 in 6 adults are sick to the point of disability with these conditions, hundreds of millions of dollars are wasted every year in useless or harmful health services and billions more are piled on in preventable disability and welfare costs.

Right now, we know that health minister Christine Elliott is reviewing the recommendations from the December 2018 Task Force on Environmental Health Final Report that recommends key actions, including formal recognition and creating a network of care, made up of a centre of excellence (for tertiary care, education and research), 6+ regional clinics and a trained cohort of family physicians across the province. She has still not released the report to the public. But she needs to hear from you and everyone you know that she should accept these recommendations and launch implementation.

Understand, these recommendations are not new: they validate the key recommendations that were made as early as 2013 by a previous major study project and resulting business case . So, no more study is needed. What is needed is implementation.

We know that your action, right now, can help the Minister to realize it’s time for her to stop the decades-long denial and step up – for the people who are sick, for their families and for the whole province – as both major study processes have recommended.

If you’re ready to send her a letter, you’ll find a template and email address just below. Please, take a moment to cut and paste it into an email – or to write your own – and please copy health critics France Gelinas (NDP) and John Fraser (Liberal). If you want to learn more about this situation, please scroll down, read the short text after the letter, explore the links, and then come back and send it.

We also invite you to participate in the social media campaign for recognition and implementation by joining https://www.facebook.com/MillionsMissingCanada/.

Thank you so much, every voice counts.

Varda Burstyn

 

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SEND A LETTER TO ONTARIO’S HEALTH MINISTER, THE HON CHRISTINE ELLIOTT, AND TO OPPOSITION HEALTH CRITICS

christine.elliott@ontario.ca

Dear Minister and Deputy Premier Christine Elliott,

I’m writing to ask you to finally tackle a massive public health care crisis that you are now in a position to acknowledge and address, by implementing the recommendations of the report, CARE NOW: An Action Plan to Improve Care for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS) (December 2018)

According to the Canadian Community Health Survey (Statistics Canada), between 2005 and 2016, the total number of Ontarians living with these disabling conditions rose from 439,000 to 740,000 – in other words, by 301,000. There is a massive epidemic going on that governments before yours have refused consistently to publicly admit or address – and so it has grown and grown to frightening proportions.

Because of the new report before you, you have a golden opportunity to help not only the people who are succumbing in their tens of thousands yearly to these disabling conditions but your whole province. You have a chance to stop the serious harm patients are experiencing in a system they go to for help. You have a chance to stop the waste of hundreds of millions of misspent dollars. You have a chance to improve the health and quality of life of patients and their impossibly overburdened families.

As May 12, International Awareness Day for ES/MCS, ME/CFS and FM, approaches, I implore you to stop the harm and neglect, appoint, fund and launch an effective implementation committee with strong expert and patient representation, and make the new network – including a centre of excellence, regional clinics and trained family physicians – a reality.

You have said, over and over again, that you are “for the people”. Please prove it. Fulfill the guarantee of universal health care, and bring our health care system into the 21^st century. There is no time to delay, and no reason.

Sincerely,

 

CC

France Gelinas, MPP – mailto:fgelinas-co@ndp.on.ca

John Fraser, MPP – http://Jfraser.mpp.co@liberal.ola.org

 

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READ MORE ABOUT THIS STORY

Can anyone doubt that we have a galloping public health crisis in our midst? Can anyone doubt the insanity of pretending it does not exist? Yet, this is what our health ministers have done for more than 30 years.

Between 2005 (when the Canadian Community Health Survey started keeping track), and 2016 (the last time the CCHS researched these conditions) the total number of Ontarians diagnosed with ES/MCS, ME/CFS and FM rose from 439,000 to 740,000. Between 2015 and 2016 alone, the total number rose by more than 66,000. These trends were similar to those in other provinces, and across the US and Europe. Especially for those suffering from ES/MCS, whose numbers rose to an average of 7% of the population across the UK, US, Australia and Sweden, our figures are underestimations. Since we have no billing codes for this condition, we can’t properly track it as we do with the other two.

For people living with these conditions, life is often excruciatingly hard.

People with ES/MCS feel, as one person said, like aliens on their own planet, and must completely withdraw from any type of work or social life because the chemicals and even the electromagnetic frequencies that saturate our social environments make them so sick.

 

 

People with ME/CFS have attacks of debilitation that can knock them down and out, and confine many to their beds for hours, days, months and years on end.

 

 

People with serious fibromyalgia deal with unbearable pain and many other symptoms as well. Those with two or three of these conditions deal with a horrendous burden of illness.

Many – we don’t know how many, since we don’t properly diagnose or track – also have Lyme disease. And ignorant doctors generally make things worse, not better, by wrongly diagnosing and wrongly treating, or simply by sheer neglect and a good deal of disbelief and contempt – adding to the nightmarish quality of their lives.

If you want to read about people’s experiences in this province, you can find their stories in the 2013 report, Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM, in particular, Parts Three and Four, pp. 59 – 166. To read more about advances in research and understanding, check out the groundbreaking, authoritative work of the team at EHS & MCS European Treatment Group.

Given decades-long denial, it should not be surprising that the same Canadian Community Health Surveys that have plotted the alarming rise in numbers of people getting sick also show that these folks have the highest unmet health needs, the greatest degrees of housing and food insecurity, the most isolation, the lowest incomes, worst health outcomes and highest suicide rates of any group of sick Canadians.

To add an extra twist of cruel irony, studies also show that taxpayers waste hundreds of millions of tax dollars per year on health fees for inappropriate and often harmful services. Yes, it is that grotesque and that grim. Find that information in the 2013 business case – the first iteration of the clear recommendation for a centre of excellence, regional clinics and educated family physicians: Recognition, inclusion and equity: Solutions for people living in Ontario with ES/MCS, ME/CFS and FM – The Business Case Proposal

The reports I’ve just mentioned came out of the first major study phase (2012-2013) since the 1980s, which was led by a collaborative of expert individuals and health provider organizations. In all, we have been working for 10 years to get major systems-solutions recommendations to address this appalling situation fixed.

The answer of the Liberal government to those reports, under two health ministers, was to do nothing except punt the recommendations to another task force. In all, that took up another six years. But now the task force has completed its recommendations – more or less identical in substance to those in 2013. It submitted these to health minister Christine Elliott last December. Minister Elliott has not made that report public and most people don’t even know it exists. But we’re letting you know, because it’s impossible to overstate the urgency of her decisive action on this matter immediately.

Implementing the task force report’s key recommendations – including public recognition, a centre of excellence, affiliated regional clinics and special training for a broad cohort of family physicians – would be life-changing for the hundreds of thousands of people who are now shut out and, indeed, regularly harmed by misguided myths that have deeply embedded medical error into our healthcare system. It would also mean that nearly one million people are not excluded from Medicare, and that policy-makers might be forced to address the environmental and social causes of these illnesses. It would mean that Ontario would, as important voices in European jurisdictionshave been calling for, for some time, begin to develop the field of environmental medicine.

For people who want to know what good clinical care looks like – the better to understand what we need here, as well as to better understand these complex conditions/diseases – have a look at these two examples.

For ES/MCS and all that goes with it: the Environmental Health Center, Dallas

For ME/CFS and FM: Center for Complex Diseases (Mountainview, CA)

REMEMBER: