An in-depth survey conducted by MEAO, with funding from the Ontario Trillium Foundation, including lengthy interviews with 51 individuals and six focus groups across the province of Ontario, produced a first-ever picture of the lived experiences of people with these conditions in the province. A detailed account of the study can be found in the full-length report; and a summary of the study can be found in the report Highlights.

Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. Complete report

Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. Highlights


  • The most heartening finding of this survey was that when individuals were able to find trained, expert physicians who delivered appropriate diagnosis and care, they experienced tremendous benefits in health and quality of life.
  • Even when experts were not found, when family physicians were sympathetic and made the effort to learn about the conditions and support patients, positive benefits were created for health and quality of life – good care, though rare, delivers good outcomes and tremendous benefits.


However, most of the time most of those surveyed were not able to access either experts or knowledgeable family physicians, and this had a very negative impact on their lives. The survey showed that those who live with moderate to severe conditions live with:

  • Challenging and disabling physical symptoms such as pain, mobility and cognitive impairments and a host of multi-organ system symptoms.
  • Many negative impacts of widespread physician ignorance, in health and in quality of life.
  • Widespread failure to deliver appropriate medical care and stigmatization and discrimination in the health care system: many medical professionals continue to believe the conditions are ‘not real’ (fictional, hypochondriacal, of psychogenic origin) and treat patients incompetently, uncaringly, dismissively and disrespectfully, exacerbated by gender bias.


‘You’re probably depressesed…’

When I went to see the endocrinologist, he would simply say I’m probably depressed. If I’ve got some kind of family problems, I should see a psychiatrist or I should get on the antidepressants. And if the antidepressants don’t seem to be working, well, I should take them longer or I should be trying something else. He didn’t see anything beyond that little box that he’s taught to think within. … And they’re [specialists) both in the assembly-line type of medicine, but they allow you so many minutes and then they kick you out the door. So anytime I went to any other specialist, I mean … Dr. H. sent me to a respirologist and he did all his [tests] … they always come up with, ‘see the psychiatrist’. … [I]f you don’t fall within some bad ranges within their particular blood testing that they send you out for, then their assumption is that you’re fine and they just lose interest, ‘see a psychiatrist,’ type of thing. Frank ME FM

  • Widespread failure to deliver appropriate support plus stigmatization and discrimination in social services, among families and the wider public. Because of persistence of erroneous views among physicians, people experience similar stigmatization in other areas of life.


‘There’s nothing wrong with you…’

I was so sick once I went to the hospital emergency because I thought I was having a heart attack, I had so much pressure in the top half of my body. And the doctor there laughed at me … and you know, you just want to hit him. Theresa ME

Before my diagnoses, when I was going in [to doctors] constantly for complaints of sore throat[s], swollen lymph nodes and the feeling that I’m coming down with something, it was such a frequent complaint that one of my doctors sent me to a throat specialist. It was a very quick visit. It was about five minutes. He took a lighted thing and looked down my throat and said in disgust, his tone was full of disgust, and he said, ‘there’s nothing wrong with you,’ and he sent me home. Sharon ME FM

  • Great financial hardship, due to loss of employment without access to disability benefits or accommodation, and vacuum in social services; hence discrimination on top of illness.


Even many employed individuals cannot support costs on their own

I earn too much money to get social support from the government or to benefit from any government programs, but I don’t have enough money to pay for all of what I have to pay for, especially when I’m on medications that cost $600 a month and Trillium doesn’t cover it. So I’m stuck in the middle and don’t have any social support for, you know, things like: I need orthotics. I need the dentist. I need, you know, because I have dizzy spells and I can be unsteady on my feet, I get a little bit of support for the walker for ADP, but I don’t get support for the shower pole, which is really something that I need support for. And getting on a list for any kind of community housing is not something that I’m a priority for. So even though I have to support myself with no other income than what I’m getting, I don’t qualify for any other support financially. Connie FM ME nurse  Honestly right now, I don’t have enough money this month to buy the rest of my supplements. I have to wait for another eight days until my cheque comes in, but for those eight days I am going to be without my cough pill. If I had money I could follow my regimen more and that has been a problem for me, running out of money to follow what I need and that causes inconsistency in my body.  Hope MCS social worker


  • No system of support, a ‘vacuum in care and support with tiny islands of assistance’, no medical and other health professional education, therefore great deficits in care.
  • Great isolation due to untreated and unsupported ailments and stigmatization.


Emotional trauma is often part of the experience

The main diagnosis, I don’t know what is worse; I have been diagnosed with toxic brain injury, MCS and FM. … I couldn’t work and I couldn’t stand all the smells and everything in Stouffville so I had to sell my home – I was living in a little cottage that belonged to some friend of mine up here and then they let me live in it and were trying to help me with research and stuff. … in November of 2002  … I was probably so suicidal because I thought that the rest of my life was going to be spent in a little cottage by the river where it was freezing cold with a composting toilet, by myself in pain, which wasn’t an option. … The whole experience changed me psychologically so much, I lost myself, I died. The real Sandy basically died with this and this person that is left now is a totally new invention, I don’t even recognize myself in the mirror. Sandra MCS FM


  • Great hardship for families – children, spouses, parents and siblings – as a result of all the above factors.


Excluded from informal support networks

I just wanted to comment on the fact that there is no social convention to bring casseroles to people with Fibromyalgia, chronic fatigue and multiple chemical sensitivities. … A close friend of mine got sick shortly before I did. She was diagnosed with breast cancer and was unable to work because she had to go through chemotherapy, fairly bad chemotherapy. She had the community just draw close around her. It was unbelievable the support that her diagnosis mobilized. I got sick months later and who came to take me out for coffee? The cancer patient. And in her words, ‘you know you’re screwed when a cancer patient undergoing chemotherapy, has to take you out for coffee.’ So, I thought, yeah, I am pretty screwed. Amy FM