I think this is so good at reflecting the reality of having Me/CFS in Canada, and maybe elsewhere, that I'm going to put the whole thing here. Sorry to those of you who prefer links,; please just skip.
I'm one of the people that finds having to link tiring. I use cool previews on firefox so that I don't have to click to change pages, then click to get back, but many people don't have this.
Statistics Canada breaks down the illnesses and sufferers in Ontario for 2005:
Multiple Chemical Sensitivities: 181,000
Myalgic Encephalomyelitis: 85,000
When Joanne Saraiva went to her doctor for her chronic pain and fatigue and debilitating mental fog, the physician chalked it up to depression and sent her to a psychiatrist.
She was just depressed, her doctor said, and had taken on too much. After all, Saraiva, now 50, had changed jobs, was raising two boys and had suffered a loss in the family.
Desperate to get better and resume her normal life as a busy, active mom and career woman, Saraiva complied and was popping anti-depressants to treat her degenerating health. She was constantly exhausted and was always in pain.
It was like someone took a bat and beat me up all over, Saraiva says in her Brampton home. Like I was walking on nerve endings.
While she could endure the pain, it was the cognitive decline that most alarmed her.
It felt like someone was pulling down the blinds on the window, she says. My energy, concentration, ability to process information, word retrieval and perception were all going.
But after a year of visits, the psychiatrist looked at her and confirmed what, deep down, Saraiva always knew.
She wasnt depressed. There was something else more insidious at play.
I know my own body. I wasnt sad over anything. And in fact, I work better under stress, thats who I am, she says.
Misdiagnosing illnesses like fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome, and multiple chemical sensitivities as psychiatric problems and figments of the imagination is common practice among todays doctors who lack a general understanding, says Dr. Riina Bray.
We have to educate physicians so that they dont blow patients off as looney, says the medical director of the Environmental Health Clinic at Womens College Hospital. Thats probably the easiest way out, to blow them off as psychiatric issues.
But theres a huge difference between people who suffer from depression, and those who suffer from legitimate medical conditions, adds Alison Bested, a hematological pathologist and specialist at the same clinic.
People who are depressed, for instance, are so low emotionally they can find little inertia to get going and have lost all enjoyment of life, Bested says. Meanwhile, those who suffer from one or a combination of the three illnesses live for their good days, she says.
On a good day, these people are off to the races.
It would take years for Saraiva to get an official diagnosis and understand what was wrong with her. She suffers from chronic fatigue syndrome, characterized by pathological exhaustion that cannot be reversed by rest shes incapable of deep, restorative sleep. She also suffers from fibromyalgia, chronic pain throughout her body. Both can be traced back to a series of viral infections that left her bed-ridden, a common trigger. With these illnesses, brain fog is also common.
Saraiva was misjudging the stairs and would draw complete blanks at work where she multi-tasked as a senior clerical worker. Suddenly, simple tasks eluded her: She couldnt remember how to put people on hold, and was reduced to writing cheat sheets on how to log on to the computer shed been using for years.
For the 440,000 Ontarians who suffer from either one or a combination of these illnesses, getting an official diagnosis is often half the battle, said Jeanne Samonas, president of the Myalgic Encephalomyelitis Association of Ontario.
It blows your mind that that number of people the size of a city are not getting diagnoses or treatments, Samosas says.
Thats because there are few specialists in Canada with the training to diagnose and treat the three illnesses, which often strike as a package deal. The Environmental Health Clinic at Womens College Hospital in Toronto is one of two clinics in Canada the other being in Nova Scotia where patients can seek help.
Its a huge problem, Bested says. There are only a handful of doctors trained on the pathology of these illnesses and theres virtually no ongoing research which is deeply needed.
Twenty years ago not a word was written about these illnesses in textbooks, she says. Fibromyalgia, for example, was added in the World Health Organizations International Classification of Diseases in 1992.
Physicians my age and older havent had the education or training to diagnose these illnesses, Bested, 56, says. I learned about this because people were coming to me with the illness.
Saraiva only got her official diagnosis after doing her own online research, which led her to the Toronto environmental clinic. She was put on a 10-month waiting list.
Doctors didnt know what to do with me, Saraiva says. I had to become my own advocate.
During the waiting period, Saraiva battled her employers insurance company for long-term disability payments: Company doctors ordered her to go back on anti-depressants and join a gym. She was given a pedometre and had to clock 800 steps a week. They also treated her illnesses as a psychiatric, lifestyle choice, despite appeals from her own psychiatrist and doctor who wrote on her behalf.
Similarly, she was denied three times for Canadian Pension Plan disability benefits and had to take the case to a tribunal which ruled in her favour.
Were dealing with powerful, wealthy insurance companies who have a bottom line, Samosas says. A lot of people have had horrendous cases in court with CPP and fight for years.
A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities arent recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.
At the government level, theyre invisible.
Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as its feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.
We cant get funding because were not considered a chronic illness, and yet they wont take our blood, Saraiva says.
In a rare public display, sufferers organized a rally at Queens Park May 12 to mark International ME/CFS & FM Awareness Day and appeal for a treatment centre.
According to the results of a 2005 Canadian Community Health Survey prepared by Statistics Canada, of 23 chronic health conditions, chronic fatigue, chemical sensitivities and fibromyalgia topped the list for unmet health care needs.
After diagnosis thats where it all ends for a lot of people, Samonas says.
Saraiva is still looking for someone to treat her. She misses the woman she used to be: The woman who others called supermom, who jogged three times a week and was the go-to person at work whenever there was a problem.
Its time, she says. Its time that were recognized and we get treatment and funding.
" 2005 Canadian Community Health Survey prepared by Statistics Canada, of 23 chronic health conditions, chronic fatigue, chemical sensitivities and fibromyalgia topped the list for unmet health care needs."
Nice article. The only thing I wonder about are the use of terms such as "looney" for depression vs. "legitimate medical condition." CFS/ME, FMS, and/or MCS do not equal depression. Depression, though, is a legitimate medical (mental health) condition also. It's just, no one would consider it appropriate to treat depression with antivirals, to tell people to rest and pace... But, individuals in either category of illness deserve their "respect." Just a minor quibble, otherwise, enjoyed the article. Thank you
I agree with Jewel. This is not a minor quibble. I believe it is the foundation of the misdiagnosis and lack of research for CFS/ME. I work in the psychiatric field and it is such a disservice to patients how this developed into a rift between what's psychiatric and what's real or medical because psychiatric illness such as depression and anxiety are legitimate, medical, biological illnesses and so is CFS/ME.
The problem began when GP's threw us into the "wastebasket" and referred us to Psychiatrists who then tried to make our illness into something they could treat. If all you have is a Hammer then EVERYTHING is a NAIL. So psychiatrists tried to hammer us into their little holes i.e. hypochondriasis; anxiety; depression; exercise avoidance, GET/CBT etc... because we didn't fit in anywhere else and we do indeed have anxiety, depression, aches, pains, somatic complaints but it's the result of CFS/ME, not a primary psychiatric condition. Then we get shoved into the psych bible, DSM because we are most often being treated by psychiatrists.
In college, when my neurological symptoms became so bad I could no longer stay quiet and pushed my GP for more testing, I was promptly referred to a psychiatrist and then promptly into a psychiatric hospital. Looking back, I'm glad since I discovered my beloved career path as a psychiatric social worker and there were other patients there with similar anxiety symptoms who told me about their journeys with an odd illness I'd never heard of before called Fibromyalgia....
Unfortunately, many of us do end up with depression, anxiety and PTSD as well as CFS/ME due to the way we are treated by physicians, our famillies, our friends, co-workers....THE WORLD. And personally, because of that, the way my illness was misdiagnosed and mistreated, I don't really trust psychiatrists and psychologists. It's makes my work life hell. I'm not excusing psychiatrists (because they could have done more advocating for us rather than forcing us into their BOX) but they do get dumped on when other specialities can't figure out what's going on. But IMHO once a patient is referred to a psychiatrist, they've already been written off, thrown into the wastebasket, considered a difficult case or a hypochondriac. So the cycle continues. Now, with WPI and Dr. Klimas and forums like Phoenix Rising there is a paradigm shift and I am so grateful to be a part of it. It's so exciting and fills me with hope.
I agree about this being a problem in the article, and actually would hesitate to pass it on because depression is a real condition. There should be no animosity between two very marginalized sets of people , those with mental illnesses and those with CFS/FM.
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