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NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

Cheshire

Senior Member
Messages
1,129
What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.

https://www.nytimes.com/2017/03/18/...n-chronic-fatigue-syndrome.html?smid=tw-share
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks for posting, @Cheshire!

Just wondered if you wanted to change the title a little - I read this as the NYT having got something wrong, or Rehmeyer & Tuller having got something wrong! Adding quotes and a "by" (in red) would clarify.

NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER
 

Tom Kindlon

Senior Member
Messages
1,734
Fantastic!
This moving post by Julie Rehmeyer on Facebook about the article made my tear up a bit..

Bigger version
Julie Rehmeyer bigger.png


 

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Yogi

Senior Member
Messages
1,132
Wow wow wow. Congratulation to David and Julie.

You are both heroes!

Was hoping this story would make it to the NYT (where David Tuller used to write).

The Pace trial author's intransigence and cover up of their epic fraud is furthering the Streisand effect . Great!! Keep digging Pace authors as your trial is going down as the biggest scientific fraud in recent times.

Thank you Dr David Tuller and Julie Rehmeyer.!!
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
From Julie's FB post about her editorial

So, my friends, it brings me so much pleasure to share the joy of this day with you. I hope you’ll celebrate with me in three ways:

1. Read and share the op-ed.
2. Preorder my book.
3. Subscribe to my email list.

You can do the latter two at ThroughTheShadowlands.com.

Whadaya waiting for? :). I''ve already pre-ordered my UK copy, from Amazon UK
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
The editorial mentions the recent recovery critique paper by psychology researcher Dr Carolyn Wilshire, @Tom Kindlon, Alem Matthees (and me).
NYT Op-Ed said:
In December, the journal Fatigue: Biomedicine, Health and Behavior published the re-analysis of some of the data. The PACE investigators claimed in the journal Psychological Medicine that 22 percent of those undergoing either psychotherapy or graded exercise “recovered” from their illness. But that was not based on the study’s original definition for recovery but on the looser one adopted by the researchers after the trial began.

Using the original definition, the re-analysis found that 7 percent or less had “recovered” with no statistically significant differences between those who did and did not receive the treatments. In their response, the investigators argue that there is no “generally agreed-on measure of recovery.”


Here's a summary of the key findings of the paper (MEAction blog)
PACE relaxed the fatigue and physical function recovery thresholds so far that patients could (and some did) count as recovered at the same time as being fatigued and disabled enough to join the trial. They counted patients as recovered who said they weren’t “very much better”, but merely “much better”, and even if clinical staff judged them to still meet Oxford criteria for CFS. This is not recovery.

 
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Aurator

Senior Member
Messages
625
Very well done to the authors!

Well done also to Jacqueline Tam for her very sensitive artwork accompanying the article! The magnitude of the problem that is ME and the Liliputian role doctors have so far played in tackling it is well summed up in the size disparities of the figures in her image, which also succeeds in giving a quiet dignity to the notional patient.
 

Yogi

Senior Member
Messages
1,132
2017 is going to be "the year"! The snowball is getting close to the point where it is going to roll down the slope itself, and those trying to stop it will fail.

So true.

Here it is coming for you Peter, Trudy and Mike. A preview.


...And no chaps don't be silly this is not a death threat so don't even think of calling up the science media centre for another smear campaign against pwme!!!