Critical PACE article praising Alem Matthees on News.com.au

[Esther12]

http://www.news.com.au/technology/s...y/news-story/eb566e1a0f6bcaadb362818a12c2e386

Just started reading this an it looks very good. They're a big mainstream news site, so getting this coverage is great for us (has it been posted in another thread yet? Couldn't see it.)

Click and share!

 

[GreyOwl]

It's a good article, and it's a site with huge traffic in Australia.

ETA: article traffic currently at 856 readers, 600 readers above the next most popular headline.

 

[alex3619]

I read this an hour or two ago. It covers some of the biomedical research as well, including Ron Davis, and discusses the replication crisis.

 

[Murph]

Thanks for reading. I wrote the piece, inspired by Sasha Nimmo's interview with Alem. I was helped enormously by Alem himself, plus Tom Kindlon and Carolyn Wilshire.

The forums here gave me a huge amount to work with in assembling the bits and pieces that made up the story! I'm very pleased it seems to be getting a good audience.

 

[Sean]

Very good article.

Thanks to Murph, and to the editor for running it.

 

[Kati]

Thanks for reading. I wrote the piece, inspired by Sasha Nimmo's interview with Alem. I was helped enormously by Alem himself, plus Tom Kindlon and Carolyn Wilshire.

The forums here gave me a huge amount to work with in assembling the bits and pieces that made up the story! I'm very pleased it seems to be getting a good audience.

Well done @Murph, thank you so very much!

 

[Esther12]

Thanks to all involved. It does seem such a great story for the media to pick up on, so hopefully this will encourage others to cover it.

 

[trishrhymes]

Well done @Murph. Excellent article.

 

[AndyPR]

Thanks very much for the excellent article @Murph , any chance you could request the text below Alem's photo right at the top of the article be amended, currently reads "A letter from Alem Matthees helped lead to a breakthrough in chronic fatigue.", I would want it to have "syndrome" added to the end.

Chronic fatigue is a symptom, Chronic Fatigue Syndrome, if we have to use that name, and for the purposes of the article that is what has been used, is the condition that we suffer from.

 

[Sasha]

This is terrific, @Murph! That's great that you managed to get this somewhere so high-profile.

I'd agree with Andy that it would be good to clear up a few instances of "chronic fatigue" instead of "chronic fatigue syndrome" - if you do a word search, you'll find them.

Also, Ron Davis doesn't head the OMF, Linda Tannenbaum does. But Ron Davis heads their Scientific Advisory Board:

http://www.openmedicinefoundation.org/scientific-advisory-board/

These are minor things, though - your article is top stuff!

It's a pity we can't leave comments. I'd like Australians to know that thousands of patients overseas are grateful to an Australian patient - Alem Matthees - whose actions are making such a difference.

 

[trishrhymes]

Chronic fatigue is a symptom, Chronic Fatigue Syndrome, if we have to use that name, and for the purposes of the article that is what has been used, is the condition that we suffer from.

It could be said that the PACE trial was studying chronic fatigue, not CFS or ME, since the Oxford definition they used only requires the single symptom 6 months unexplained fatigue.

 

[Sasha]

It could be said that the PACE trial was studying chronic fatigue, not CFS or ME, since the Oxford definition they used only requires the single symptom 6 months unexplained fatigue.

But they claimed to be studying CFS and if CF and CFS are used interchangeably in the article it will give the impression that they're the same thing. The article doesn't explain the Oxford issue (rightly, IMO, because that would be too much detail) so the reader doesn't have that context.

 

[Murph]

Thanks very much for the excellent article @Murph , any chance you could request the text below Alem's photo right at the top of the article be amended, currently reads "A letter from Alem Matthees helped lead to a breakthrough in chronic fatigue.", I would want it to have "syndrome" added to the end.

Chronic fatigue is a symptom, Chronic Fatigue Syndrome, if we have to use that name, and for the purposes of the article that is what has been used, is the condition that we suffer from.

Cheers

Good tip - I will see if I can get those changed tomorrow morning.

 

[ScottTriGuy]

Cheers

Good tip - I will see if I can get those changed tomorrow morning.

@Murph

First, thanks for the awesome article - I shared on my facebook, something I do rarely.

Second, is about my pet peeves.

Could it even go one better and use 'Myaglic Encephalomyelitis' throughout?

'Chronic fatigue syndrome' has so much historical negative connotations to overcome. It feels more like an accusation than a diagnosis.

Myalgic encephalomyelitis, except perhaps in the UK, carries none or very little negative baggage.

Same with "ME/CFS" - in my perfect world we'd only use "ME" and let 'cfs' fade away like a bad nightmare.

I realize these changes are probably out of your control, but wanted to express my thoughts.

 

[Esther12]

@Murph

If looking at minor errors, it looks like you talk about the 'tribunal' at the ICO stage here, when the tribunal was the final appeal:

Eventually the UK Information Tribunal Commission had enough. It told the PACE trial authors they had to release the data. The authors appealed the decision. They claimed confidentiality of the subjects of the study, although, as the tribunal would point out, the data was all anonymous.

 

[Barry53]

Excellent article @Murph, helping to set the record straight. We need this to get wider exposure in the UK somehow.

 

[Murph]

My editor just gave me some feedback. 85,000 readers so far! That's a strong result, even for stories on topics with far more population-wide appeal. (Not quite as far-reaching as a top-rating TED talk obviously, but not too shabby!)