Discussion in 'BioMedical ME/CFS News' started by Sly Saint, Oct 23, 2019.
full article here
Bad title, as usual. Mostly OK article. Fumbled on the WHO recognizing the disease in 2015, rather than 1969.
The title isn't only bad because of the fatigue but because it says research begins in earnest. That has yet to happen. The network is the step that may make research begin, it is step 1 and step, actual research being funded long-term, is not happening yet and could still be derailed, as it has in the past. We have had many times the promise of this happening and every time it was aggressively countered and shut down.
These things matter. It's like the usual framing of "some patients" used to describe some of the issues like delayed diagnosis, worsening from exercise and the like. It makes it sound as if it's a small fraction, rather than the overwhelming majority, in some cases the near totality.
But it got most of the facts relatively OK. Would have been more helpful describing the scale and impact, what it means to have nearly half a million Canadians too disabled to function but left to fend for themselves.
Anyway, small steps in the right direction are usually the best we can hope for.
Good to see a reasonable article on ME.
Why the title though? After all all the way through the article they use the term ME. Strange.
Also, now that there seems to be reporting from Canada I am wondering where does a journalist go to get their info for an article. Any insights anyone?
The writer is Vik Adhopia. I've not heard of him before but I don't really follow the news much. It might be good to develop a rapport with him.
If there ever was any doubt as to why the term chronic fatigue should not be used here's the first comment below the article:
(I've withheld the name)
This dreadful election and loathsome Prime Minister has given me chronic fatigue of politics.
Not my political statement, just an example of people coming to the article with no knowledge and what they take away from it. While this sort of thing might be rare it's demeaning to those ill with ME even though I sincerely doubt that was the intent. No such comments can be made with ME. A minor point I suppose.
Other comments make it quite clear that there are many PwME who are rather in the dark as to current scientific endeavours.
Is it possible for someone to make a comment and perhaps link to this forum? (I checked and external links are allowed and apologies for not doing this myself).
My guess is that titles are not written by the authors, this is media related. This often happens even on Youtube as well. It may be editors, it may be someone else, but its done to try to maximise readership. Headlines are not about accuracy.
CBC have now updated the page and corrected the title of the article.
CBC will airing a video interview tonight at 9pm ET.
Yes, agreed. My statement suggested that the author has some control but I agree this is usually not the case. I'd still like to fathom why editors need to be so economical with being precise.
As I said, it amounts to being careless and demeaning about the whole group of people they're reporting on--not really kosher. Although, as noted not really the authors fault.
ETA: I see TigerLilea caught that they have updated with Syndrome in the title. So that's good.
Title: New research into chronic fatigue syndrome
This is a great report. Really did their research. Wow.
Incredible achievement by those who helped make this happen. Scott. Sabrina. Dr Moreau and his team. Minister Petitpas-Taylor. Everyone else that I can't remember. This is a defining moment.
also available on youtube
I think that was about the best ME media coverage to come out of Canada - mind you, there were still some minor inaccuracies, but compared to the 'reporting' of his peers, this was a huge step forward in getting a media outlet to use accurate language.
Yes, I agree, @ScottTriGuy. By comparison, massive improvement.
An understatement: it's been a long time waiting for this!
Request/suggestion for those who are able: please forward one, or both CBC articles to others, including politicians, those in the medical field, and media.
Thank you very much!
I hope this media coverage assists all pwME in all countries.
Thank you to all ME advocates who helped make this happen!
Yesterday there was an item on New Zealand National radio, from the CBC about ME/CFS. It had Moreau and Ron Davis. It came out of the blue on an international news program, it was pretty good, a nice surprise. Yesterday was Labour Day, a public holiday, so plenty of people in NZ will have heard it with their morning coffee. Thanks to all involved.
There’s much to learn from successful advocacy I’m sure the Canadians will be happy to pass on their knowledge.
ETA and hopefully mixing with a different class of researcher will also be a learning experience
Thanks for posting, @Hutan.
It's great to see this news article picked up elsewhere.
I was a journalist and editor in Canada for years, and this is absolutely correct for magazines and papers. (I know nothing of YouTube). Sometimes the writer will suggest a headline, but, in my career, I could count on one hand the number of times I saw the author's headline (or subhead) used. And in hard copy, the headline is also determined by how much physical space is available.
There was local news from Edmonton about the research network. Not as good as the CBC report but the facts are OK. A local researcher was interviewed. "Chronic fatigue" again, though. Ugh.
In French but Dr Moreau did an excellent interview on a CBC radio show (whose name is a seriously great pun): https://ici.radio-canada.ca/premier.../446675/audio-fil-du-lundi-28-octobre-2019/21.
Not much point to summarize it and there's no transcript. It's information we know and focused mostly on the next steps ahead. I am really hoping that incoming reports dig a bit into the current state of things as it's not obvious to people just how dreadful the situation is and how currently there is absolutely nothing. At least it gave a good overview of the scale, the number of 580K is being repeated enough that it may start to raise people's interests. Moreau mentioned that one of the motivations was an increasing number of GPs and specialists who are making requests to Health Canada. That was interesting.
There doesn't seem to be any current plans (that I know of) for a more thorough epidemiological study to expand from that 580K and try to establish the disease burden. I think that is the killer stat, once people understand the implications of what amounts to roughly 1.5% of the population being largely, if not fully, disabled. The dollar signs mount pretty rapidly when you add it all up.
@ScottTriGuy how did you Canadians achieve so much positive change in relatively little time?
What's that saying?....'years of hard work to be an over night success'.
I'd say key elements were:
- usng an inside / outside strategy
- having the right people with the right skills in the right roles
- but numero uno is building relationships - both with policy makers and within the community
Probably in hindsight the pivotal meeting was in May 2018 at the Montreal ME conference where we pushed hard to get a meeting with the Scientific Director (Dr Karim Khan) at the conference.
We've built on that relationship and forged new ones, including with the Health Minister and her staff. It is natural that people like working with people they like, and our team is very likeable!
Some posts relating to a slide about the Canadian collaborative released prematurely on social media and re-posted here have been deleted.
Separate names with a comma.