News of a potential ME Epidemic has gone viral. A preview of the 2015 Statistics Canada unpublished Canadian Community Health Survey (CCHS) indicates that the number of patients diagnosed with chronic fatigue syndrome, myalgic encelphalomyelitis, ME/CFS or Systemic Exertional Intolerance Disease (SEID) was reported at just over 560,000 – that’s an increase of 37.6% from 2014.
Open Letter Petition
The Society has joined with other Canadian ME advocates to demand that the Federal government investigate this alarming increase, pointing out that ME has been seen in epidemic form in the past. With no response forthcoming from the Ministry of Health, Millions Missing Canada has released a video and launched an Open Letter Petition to Minister Philpott on Change.org, which has already received over 1,700 signatures. If you are looking for information to share with friends, family or physicians, there are great links at the bottom of the petition.
The Society supports this petition and asks that you watch and “like” the video, and read, sign and share the petition widely.
CTV News National Coverage
It’s hard to get the media’s attention, especially when there is stigma involved. However, Avis Favaro, Canada’s longest serving on air medical correspondent, picked up on our plight last year when the Canadian Institutes of Health Research (CIHR) made the shocking decision to turn down the only ME research funding application that year on the false grounds that there was no evidence that ME is a biological disease. Avis’ story on the stigma faced by ME patients, had international ME advocates referring to Canada as the “Dark North”. In fact that story, along with the relentless pressure placed on the government by Canadian advocates, led to the Ministry of Health and the CIHR finally meeting with patient advocates.
Fast forward to August 9, when CTV aired a second story by Avis Favaro on ME, one covering the 2015 CCHS numbers: “Chronic fatigue syndrome in Canada ‘even worse than we thought’: survey”. Scott Simpson (Millions Missing Canada), Lydia Neilson (ME/FM Action Network) and Dr Eleanor Stein were interviewed for the story, which aired nationally. It was even picked up by Doctors of BC, who included it in their daily News Flash to members.
While Avis’ broadcast was good, the web text version was very flawed. Ignoring the request of every subject interviewed to use the more appropriate term, “myalgic encephalomyelitis, the written story referred to the illness as “chronic fatigue”, only adding “syndrome” after much pushing. Also missing from the written piece was the reference made by all the subjects to the severe lack of government funding for research.
We have struggled to get the media’s attention for so long, only to learn that we can’t control the message. However, raising awareness through the media is critical for change. And, while the wheels of change are excruciatingly slow, that creaking sound… it’s the wheels turning.