The Mouse That Roared: Patient Advocate

[omerbasket]

I am with Angela. Read Osler's Web again and remember what AIDs activists had to do to make things happen......if it wouldnt have been for Don Francis history could be very different. Lets not be niave. Can anyone answer this:

How did 2/3 of the CFS test tubes get contaminated, but only 2-3% of controls did?

Oh, you don't understand? The controls have super-powers! They probably wear a robe!
I think that these studies have much more wholes than a swiss cheese. They talk about culturing - but the 67% in the "Science" study are without culture; They talk about PCR (with culture, ofcourse), but the WPI found antibodies, which cannot be a result of a contamination; Some of them show that their samples have been contaminated... Do their mistake should ruin a work of people that did everything right?
It is all ridiculous. I really hope our revenge day will come soon.

 

[urbantravels]

If Trine T. had wanted to get patient reactions, she could have asked some of us if it was OK to use our words, or asked us directly for a comment. I for one would have been happy to speak with her or exchange email with her.

That she took a quick look at PR to cut and paste a few quotes from people here, without obtaining their permission to use their words, strikes me as the quickest, dirtiest, and least journalistically responsible way to include a "patient reaction" graf or two in an article.

I think the PA's post is way, way, way over the top.

 

[dannybex]

I think the PA's post is way, way, way over the top.

I agree completely. Really disappointed in him.

 

[Cort]

But if Coffin has constructed the ME/CFS community as whiners in some way - he should be called on it, though it looks as if the PA is actually decrying a lack of respect for the illness in Coffin (and Stoye).

This is how it goes. Now you're saying IF John Coffin has these attitudes........and it starts to sink in...and you start to think "well, he's like that". The thing is I can't imagine that Coffin has done that or that he has demonstrated a lack of respect for CFS.

Now people are going to read that and dump John Coffin into the 'thinks CFS is BS, trying to screw CFS patients category" and I don't think that's fair. Maybe I'm missing something but I haven't seen anything to indicate that...I've see a retrovirologist sometimes asking some tough questions...but I've never heard him say anything demeaning about the patients nor would I expect to hear that him.

 

[camas]

I don't think you can stop them from taking comments from an open forum. I am not sure I would want to stop them even if we could.
The only thing that's bugging me is that the usernames were used as well: this wasn't really necessary and it's uncommon practice I think.

I believe that under fair use laws she was required to include their user names, but not contacting them before quoting them was sloppy and ethically questionable. (Just the perspective of an old fart with a degree in Journalism.:Retro mad

 

[jspotila]

That she took a quick look at PR to cut and paste a few quotes from people here, without obtaining their permission to use their words, strikes me as the quickest, dirtiest, and least journalistically responsible way to include a "patient reaction" graf or two in an article.

I can think of at least one other reporter who has published comments from this forum without permission (and no one complained about it then). And people on the forum repost quotes from other sources all the time, and not always with permission. Seeking permission to quote a public statement is a courtesy, but Ms. Tsouderos is not the only person to have quoted without checking first.

 

[George]

Now see I though Chris's blog was his emotional reaction to the tactic's being used. And yes I say tactic's, last year we saw a very well orchestrated publication and press release meant to discredit the findings That included splashy headlines and misinformation. This year the same thing is again orchestrated and again we see the splashy 1000% headlines and misinformation that never get's straightened out in the publics mind and that includes the doctors who treat us.

Chris reacted with all the angst, pain, frustration, anger and hurt that all of us felt at another attack on what feels like the tiniest step forward for understanding our illness, for gaining it recognition and validation. Chris is a father who has been through hell and his blog reflects that.

The fact that the "journal" chose this time of year to publish this "theme" does not feel random especially in light of Wellcomes rather dubious press release which was written for maximum effect (misinformation at the top and facts and caveat's at the bottom).

Fact is we just have to take our lumps. Science is an interesting process of people being people. And forums, blogs and other forms of e writing are just folks reacting to what other folks produce. In the end it will either work out or it won't and we will live with what ever happens.

 

[floydguy]

I can think of at least one other reporter who has published comments from this forum without permission (and no one complained about it then). And people on the forum repost quotes from other sources all the time, and not always with permission. Seeking permission to quote a public statement is a courtesy, but Ms. Tsouderos is not the only person to have quoted without checking first.

Maybe so but it seems more than half-assed for anybody writing about a serious issue for a major newspaper and one of the largest media companies in the country to be quoting random usernames from an internet forum. What faceless people do on the internet is not a very good comparison, IMO.

 

[camas]

And people on the forum repost quotes from other sources all the time, and not always with permission. Seeking permission to quote a public statement is a courtesy, but Ms. Tsouderos is not the only person to have quoted without checking first.

Jennie, do you really believe that commenters on this forum with a limited reach should be held to the journalistic standards of professionals working for a major national newspaper?

Who was the other journalist who quoted commenters without contacting them?

 

[Angela Kennedy]

This is how it goes. Now you're saying IF John Coffin has these attitudes........and it starts to sink in...and you start to think "well, he's like that". The thing is I can't imagine that Coffin has done that or that he has demonstrated a lack of respect for CFS.

Now people are going to read that and dump John Coffin into the 'thinks CFS is BS, trying to screw CFS patients category" and I don't think that's fair. Maybe I'm missing something but I haven't seen anything to indicate that...I've see a retrovirologist sometimes asking some tough questions...but I've never heard him say anything demeaning about the patients nor would I expect to hear that him.

There is a LOT of information passes in the ME/CFS world. IF Coffin has shown certain problematic attitudes, he should be called on it! That doesn't make me automatically believe Coffin is some 'baddy' as you've intimated, but I do have problems with some of his comments. That is allowed.

 

[Angela Kennedy]

Thanks Angela for that succinct and accurate historical perspective, and how it relates to these recently published articles. I'm copying your paragraph and sending it along via e-mail to acquaintances I normally keep updated on the latest in ME/CFS news.

Best Regards, Wayne

Thanks very much Wayne! What's the betting Trine DOESN'T pick it up though lol!