New David Tuller NYT on case definitions! Wow!

L

leela

Senior Member
Messages
3,290
Yay! UT, you're finding some goodies tonight! There is only one bit I have a problem with:

But it matters deeply to those convinced it is a viral disease, who say the exercise therapy advised by the Lancet study can cause major relapses in people with chronic fatigue syndrome — a claim supported by some patient surveys.
Click to expand...

I'm too cranky and herxy to do it myself, but could someone point Mr. Tuller to Satcy Stevens and the Pacific Fatigue Labs?
He (and the public and doctors everywhere) need to know it is supported by WAY more than patient surveys!

Still, Good on 'im for writing about me/cfs again, and on you UT for digging up all this good stuff :)
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
leela said:
Yay! UT, you're finding some goodies tonight! There is only one bit I have a problem with:



I'm too cranky and herxy to do it myself, but could someone point Mr. Tuller to Satcy Stevens and the Pacific Fatigue Labs?
He (and the public and doctors everywhere) need to know it is supported by WAY more than patient surveys!

Still, Good on 'im for writing about me/cfs again, and on you UT for digging up all this good stuff :)
Click to expand...

Does anyone have a link. I emailed Mr. Tuller with my thanks and will send that too.
 
urbantravels

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I don't deserve any credit except for being near my computer when others start twittering and facebooking the good stuff.

Leela, I was desperately looking for a place to comment on the NYT article to make that very comment and talk about the Pacific Fatigue Lab - but it doesn't seem to be set up for comments. So I intend to email Tuller, but can't do it properly right now owing to external circumstances.
 
L

leela

Senior Member
Messages
3,290
Good! And more Yay! I am SO tired of this endless broken record of no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers
aaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhrrrrrrrrrrrrrrrrggggggggggggggggggggghhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!
I'm so grateful for people like Mr Tuller; it's just appalling that this info is just not OUT there where people like him can easily see it.
Little phrases like "patient surveys" or "patients claim" just irritate the frack out of me, when there is DATA that can be referred to, instead of continuing to make us appear to be whingeing hypochondriacs.
(okay I'm dumping metal today so a lot of the irritation is amplified....) :eek:
 
Enid

Enid

Senior Member
Messages
3,309
Location
UK
Thanks urbantravels again - it's so good to see such articles coming in. (Pace = baloney).
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
leela said:
I am SO tired of this endless broken record of no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers
Click to expand...

Hi leela, by my count we have over 800 biomarkers now and several patented tests that are potentially diagnostic. The hard part is in proving that any of them are diagnostic. They have to be provably unique to ME/CFS, extremely reliable to go from being a biomarker to a diagnostic test. This takes time and money to prove. That is even before we get to the politics.

The problem is that journalists and even doctors are usually unaware of this. That is changing now, however slowly. We have to give David Tuller his due - he is working very hard to get this right, one topic at a time.

Bye
Alex
 
anciendaze

anciendaze

Senior Member
Messages
1,841
The article is a great improvement, but the truth is simply too unbelievable. That "well-defined cohort" specifically touted by the BMJ last year in an editorial originated in a study on psychosomatic medicine. The criteria first used excluded those with signs of recent viral infection. This cohort was then used in a study looking for viral etiology. To trace this, you must follow through two levels of references.

The CDC criteria are both the Fukuda definition and the Reeves 2005 definition, which are somehow identical, so that it didn't matter that the Reeves definition was published long after studies which used it. Analysis of the questionnaires and instructional material used in Wichita shows post-exertional malaise has either been redefined or deemphasized. Published responses to questions about Reeves vs. CCC from the CDC show physical signs of infection again being primarily exclusionary. This is not how you test an hypothesis of viral etiology.

As a journalist, Tuller should be instinctively suspicious of anyone who "operationalizes" a definition. What this apparently means is that the questionnaires form an operational definition which is somehow related to a declarative definition by Fukuda. The apparent discrepancies between several definitions are of little concern to Reeves, et al. They have specifically endorsed the Oxford definition as also based on Fukuda, and specifically criticized the CCC. A careful analysis of detailed definitions shows they just don't give a damn about most signs or about excluding primary depression.
 
D

Dolphin

Senior Member
Messages
17,567
Yes, I would have liked a space for comments e.g. to plug the petition on the CDC (so-called) "empiric" criteria (see my .sig).
 
Hope123

Hope123

Senior Member
Messages
1,266
Supposedly, you can click on his name (byline) and it will go to an e-mail form but this isn't working for me.

I suggest people write his editor so both he/she and Mr. Tuller know the impact of this piece. I can't find the health section editor name but here's some info - perhaps write to "managing editor"?

NEWS DEPARTMENT To send comments and suggestions (about news coverage only) or to report errors that call for correction, e-mail nytnews@nytimes.com or leave a message at 1-888-NYT-NEWS. To contact a reporter, click on the byline of one of his or her articles to access the reader e-mail form. You can also find any reporter's archive here (alphabetized by last name; reporters' names are italicized): Times Topics: People

The Editors
executive-editor@nytimes.com
managing-editor@nytimes.com
The Newsroom
news-tips@nytimes.com; thearts@nytimes.com; bizday@nytimes.com; foreign@nytimes.com; metro@nytimes.com; national@nytimes.com; sports@nytimes.com; washington@nytimes.com

From this link under "News" -- http://www.nytimes.com/ref/membercenter/help/infoservdirectory.html

There are a variety of feedback mechansims but it seems mostly geared at how well online NYT works, delivery issues, etc.
 
S

Sean

Senior Member
Messages
7,378
That "well-defined cohort" specifically touted by the BMJ last year in an editorial originated in a study on psychosomatic medicine.
Click to expand...

I am always suspicious of any paper that overtly describes its patient group as "well defined", or similar. One would hope that modern medical research understands that patient selection must be well defined to give reliable results, and that it is a given, and only worth mentioning if it is not well defined, or is a newly improved definition of patient selection criteria.

Methinks they doth protest too much, sort of thing.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
leela said:
Good! And more Yay! I am SO tired of this endless broken record of no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers
aaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhrrrrrrrrrrrrrrrrggggggggggggggggggggghhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!
I'm so grateful for people like Mr Tuller; it's just appalling that this info is just not OUT there where people like him can easily see it.
Little phrases like "patient surveys" or "patients claim" just irritate the frack out of me, when there is DATA that can be referred to, instead of continuing to make us appear to be whingeing hypochondriacs.
(okay I'm dumping metal today so a lot of the irritation is amplified....) :eek:
Click to expand...

Leela, I feel exactly the same way!

Do you mind emailing Mr. Tuller your links on PEM? I don't know much about the studies, so maybe you want to give him some context. Others have put up the link to his Berkeley page with email.

http://aboutmecfs.org/News/PRJan09Pacific.aspx
http://web.pacific.edu/College-of-th...aboratory.html
also, the Light study:
http://www.ncbi.nlm.nih.gov/pubmed/19647494
plus, this slide from a komaroff presentation, from the Light study
found on page 15 from here: http://www.cfids.org/webinar/slides-091610.pdf
 
ixchelkali

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
leela said:
Good! And more Yay! I am SO tired of this endless broken record of no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers no biomarkers
aaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhrrrrrrrrrrrrrrrrggggggggggggggggggggghhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!
Click to expand...

Oh, yeah, me, too! It's that old technique of "Tell a lie often enough and people will start to believe it." And it has worked.
 
ixchelkali

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
urbantravels said:
http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?_r=1&hpw

I think you all might like this one. I did. Highlights a MAJOR issue that we know all about but the general public sure doesn't. And I think it winds up making the right argument about PACE. Hallelujah!
Click to expand...

My feelings exactly. I thought this was a great article. He did a good job of explaining the fairly arcane topic of case definitions and how it could affect the results of the PACE/GET study. I'm very happy to see it in the NYT.
 
cigana

cigana

Senior Member
Messages
1,095
Location
UK
I just emailed the editor and asked them to forward the email on to Tuller.
 
You must log in or register to reply here.
Back