The Guardian picks up the NYT story! - an opinion piece from a patient

[Kati]

Yet more research shows chronic fatigue syndrome is real. When will health services catch up?
Naomi Chainey

"Despite hopeful research, it will be years before chronic fatigue syndrome is taken seriously by GPs and healthcare services. Exercise is not the answer"

"When the New York Times publishes a piece on the glaring flaws in a large study conducted on the effectiveness of recommended treatments for chronically ill people, saying claims of recovery are “overstated” and “not justified by the data”, I can’t imagine that’s a good thing. However, as someone who has been ill with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS) for over a decade, the article represents hope...."

Much more to read at this link: https://www.theguardian.com/comment...me-is-real-when-will-health-services-catch-up

For those apt and willing the comment section at the bottom of the article is open.

 

[Murph]

snowballing! yay!

It probably seems to us that 'the disease is real, pace is fake' stories have been done to death by now but 99.9 % of people (and probably >50% of people with cfs) have still probably not seen or read one. We need more and more and more.

may the snowball turn into an avalanche.

 

[trishrhymes]

Excellent article.

I'm not sure why a British newspaper has published an article about ME that talks entirely about the situation in Australia. Can anyone enlighten me - is it lifted straight from an Australian paper?

And is it in the paper version of the British edition - I can't imagine they would publish it as it is with the Australian content about benefits etc.

 

[SilverbladeTE]

Enough attention and the CRIMINAL fraud that is PACE will go down in flames and history as a watershed
They can't argue it's an honest mistake, it's impossible because they manipulated the data so much, rather than screwed up an input type
Bad cess and damnation to them!

 

[Santilion]

A good article. It's an interesting development that has been set in motion in the media world. I hope it's only the beginning.

I disagree with one thing from the article however; I most certainly do not believe we're decades from effective treatments. But I guess the comment was probably meant to amplify the argument that ME is severely underfunded.

 

[AndyPR]

Excellent article.

I'm not sure why a British newspaper has published an article about ME that talks entirely about the situation in Australia. Can anyone enlighten me - is it lifted straight from an Australian paper?

And is it in the paper version of the British edition - I can't imagine they would publish it as it is with the Australian content about benefits etc.

It'll be from the Australian edition of the Guardian, the same thing happens for the Daily (Hate) Mail, they have an Australian edition, but, I believe, it all operates from the same online platform.

Would be hugely surprised if it made it into UK print.

 

[AndyPR]

For those of us not up to commenting on the article, please seriously consider signing up to a Guardian account so that you can then upvote the reasonable comments - currently the top rated comment is

A syndrome is a set of symptoms as as such is not a diagnosis. Yes, a set of symptoms exists. These symptoms may well have different causes in different people - auto immune disorders, depression, allergies - there's no proof that this is one disease.

which is far better than some comments I've seen on ME articles in the past but hardly helpful to us - there are already comments there that would be much better as the top comment.

 

[Sidereal]

Unfortunately the piece characterises the seriously flawed Australian research as "groundbreaking".

 

[AndyPR]

Unfortunately the piece characterises the seriously flawed Australian research as "groundbreaking".

Groundbreaking in amount of hype compared to progress made??

Just to add, I appreciate all efforts made by biomedical researchers in to our condition, I just dislike what I consider to be extreme levels of hype.

 

[Esther12]

I read this expecting it to really over-hype the Australian research, but I thought that article itself wasn't too bad on that (all research has to be classed as 'groundbreaking' if it's in the media!), it's just a shame that the headline dwealt on that aspect of it.

The article itself seemed weary of 'groundbreaking' biological research, and did say "we are years, possibly decades, from the development of effective treatments", while most articles like this dive into "this finally offers the hope of effective treatment..."

Patients desire for more cautious and sceptical coverage of ME/CFS research goes against a lot of the traditions of science journalism.

It felt like bits had been edited to the point where they didn't really say much, eg: "As it turns out, exercise and positive thinking are not a panacea." Quite possible that no-one has ever said they were a panacea.

First three paragraphs are really good, so that's great news in itself. While not perfect, it's probably the best piece on CFS to ever appear in the Guardian?

edit: The headline is pretty odd considering this section which is critical of media endlessly reporting our illness was 'real':

For example, Queensland’s Griffith University recently released a groundbreaking study confirming that people with ME/CFS have faulty calcium receptors in their immune cells, and various media outlets claimed this meant that the debate over whether or not the illness was “all in our heads” was finally over.

Never mind that the same claim was made back when studies on our metabolisms, our gut bacteria, excess molecules regulating inflammation, reduced white matter, unusual gene expression and lowered oxygen uptake were published, now our illness was real.