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Survey: rates of ME higher in Canada than the rest of the world

Countrygirl

Senior Member
Messages
5,429
Location
UK
Click on the link for the full story.

http://www.ctvnews.ca/health/survey...39595#_gus&_gucid=&_gup=Facebook&_gsc=65KYeOZ

Survey suggests chronic fatigue in Canada is 'even worse than we thought'



PHOTOS


Scott Simpson, who has been diagnosed with chronic fatigue syndrome, spoke with CTV News about living with the condition. (CTV News)

"We try to tell the government how important it is to get research money," Lydia Neilson, founder of the National ME/FM Action Network, told CTV News. "We are being accepted more and more."

Neilson also hailed the survey results as an indicator that more doctors are believing patients and diagnosing them with the disease, which causes sufferers to experience profound exhaustion, loss of concentration, muscle pain and unrestful sleep.

"It is even worse than we thought," she said.

Some who suffer from chronic fatigue syndrome require round-the-clock care, and in severe cases, feeding tubes are required to keep them alive.

Calgary-based psychiatrist Eleanor Stein, who specializes in treating patients with chronic fatigue, says the condition can be debilitating for many, and that psychological treatment is often not enough.

"What my patients need most urgently is good medical care," she said. "These people are suffering and they have nowhere else to go."

Stein expressed hope that the survey results will prompt more medical schools to include the condition in their curricula.

She says many of her patients struggle with basic daily chores such as making a trip to the grocery store, and are in need of real medical care and assistance.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
http://www.ctvnews.ca/health/stigma...syndrome-sufferers-seek-recognition-1.3067130

Part of the article is below:
Stigmatized Chronic Fatigue Syndrome sufferers seek recognition
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CTV National News: Chronic Fatigue Syndrome

Researchers find possible chronic fatigue syndrome markers in gut bacteria
PHOTOS

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Because chronic fatigue is so little understood, families of sufferers have called for more research funding.

Sanchez-Ziller first started feeling ill in 2006, and kept getting worse. By 2008, she was so tired, she had to drop out of university. By 2010, she needed a wheelchair to get around, too tired to walk. By 2013 she was bed-bound.

It took Sanchez-Ziller's family more than five years to find her a diagnosis, in part because she had a gradual onset on the condition, rather than a more sudden onset of fatigue, which is more common.

Jasmine's mother, Elizabeth, says she feels like she is losing the daughter she once knew.

"Her 20s are clicking by and this illness has just abducted her," she says.

Because the illness is so little understood, families like Sanchez's have called for more research funding.

In March, the Canadian Institute of Health Research (CIHR) agreed and asked scientists to submit proposals for up to $600,000 in funding to study ME/CFS. It then used an independent panel of experts in the field to evaluate the submitted applications.

A team of Canadian ME/CFS specialists submitted a proposal for that grant, with the aim of creating a research network, establishing standards of care for CFS patients, and educating doctors and other clinicians.

But their proposal - the only one from CFS researchers -- was rejected. The reason? The reviewers felt "there is no evidence that Chronic Fatigue Syndrome is a disease." It also said there was evidence that "psychosocial factors" are "both a cause and perpetuating factor for CFS."

In other words, ME/CFS is likely all in sufferers' heads.

Elizabeth Sanchez says she knows her daughter's illness is not imaginary.

"I see her deprived of her own life It makes me very sad and very angry. And if I could, wish this illness on those people, I would, just so they could know it is real," she says.

CFS patients and their families are furious with the decision, saying the review was based on outdated information, not the more recent research that shows that CFS is legitimate.

"It is a bit demoralizing," Sanchez said. "And it feels if it starts there, it is going to trickle down. There is no way to expect for doctors or other people in our lives to take it seriously if the researchers aren't even taking it seriously."

In a statement to CTV News, CIHR said it had “recognized the research gaps that will ultimately lead to better treatments for ME/CFS, and that building “appropriate research capacity” has been identified as key priorities.

They added that CIHR doesn’t review applications, and expresses no opinion about their quality. “CIHR’s role is to recruit external peers from the health sciences community and instruct them in peer review principles and procedures.”

CIHR said it is “actively discussing” how to address research gaps in ME/CFS, both “nationally and with international partnerships.”

Dr. Alison Bested is one of few Canadian specialists in the disorder and says the proposal response demeans patients by telling them their illness is in their heads.

"We know for sure it is a physical illness that has a huge impact on the brain, the muscles, heart and the mitochondria," she said.

"The patients are in essence, in a resting state, they’re almost like in hibernation. Their bodies cannot produce the energy it needs,” Bested added.

Surprisingly, the federal government rejection may have actually helped the cause of CFS patients. These once-invisible patients, too tired to fight, are coming out from the shadows, forming groups using social media to push for recognition and research.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
We are of mixed emotions:

Grateful for any media coverage, the on-air report was okay, but totally failed to hold the govt accountable for failing to respond to epidemic numbers. Would the article / govt response been the same if there was a 38% increase in AIDS, SARA or Zika? Of course not, it would be front page news. Evidently the institutional bias against ME / patients extends into our media institutions.

They didn't include any of my quotes that included holding Health Minister Philpott accountable. Almost every quote I gave them circled back to Philpott so they've intentionally avoided criticizing her. Curious.

The online article has many, many factual errors and we are writing to CTV to have those corrected. Millions Missing Canada cannot promote the article as it is currently written, as it perpetuates the stigma and conflation of 'chronic fatigue' with ME.

Kind of shocking that a news org would have so many factual errors. Isn't reporting facts their specialty?
 

Old Bones

Senior Member
Messages
808
We are of mixed emotions . . . .

The online article has many, many factual errors and we are writing to CTV to have those corrected. Millions Missing Canada cannot promote the article as it is currently written, as it perpetuates the stigma and conflation of 'chronic fatigue' with ME.

Kind of shocking that a news org would have so many factual errors. Isn't reporting facts their specialty?

Personally, I'm not of "mixed emotions", nor "grateful for any media coverage". I was very disappointed.

For me, any news report about ME that focuses on fatigue (and not PEM or PENE), and that also ignores many of the symptoms viewers are more likely to perceive as being associated with a "real" illness (neurological, immunological, endocrine, autonomic, cognitive, etc.) is a major fail. I'm so sorry that @ScottTriGuy 's efforts didn't translate into a worthwhile article -- he, and we, deserved better.

If CTV would like an example of how to cover the ME story well, they need go no further than this report from South Africa:

http://www.meassociation.org.uk/201...-tv-news-documentary-on-m-e-24-february-2017/
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
We are of mixed emotions:

Grateful for any media coverage, the on-air report was okay, but totally failed to hold the govt accountable for failing to respond to epidemic numbers. Would the article / govt response been the same if there was a 38% increase in AIDS, SARA or Zika? Of course not, it would be front page news. Evidently the institutional bias against ME / patients extends into our media institutions.

They didn't include any of my quotes that included holding Health Minister Philpott accountable. Almost every quote I gave them circled back to Philpott so they've intentionally avoided criticizing her. Curious.

The online article has many, many factual errors and we are writing to CTV to have those corrected. Millions Missing Canada cannot promote the article as it is currently written, as it perpetuates the stigma and conflation of 'chronic fatigue' with ME.

Kind of shocking that a news org would have so many factual errors. Isn't reporting facts their specialty?

Not super familiar with Canadian media, but not surprising they would not want to be Critical with a Trudeau at the helm.

GG