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Volkskrant (Dutch newspaper) article on PACE study

Dolphin

Senior Member
Messages
17,567
[The request was not for all the data but only a small number of outcomes]



From: Dr. Marc-Alexander Fluks



Source: Volkskrant (The Netherlands)
Date: September 6, 2016
Author: Ellen de Visser
URL: http://www.volkskrant.nl/wetenschap/chronisch-vermoeiden-op-zoek-naar-erkenning~a4370961/
Ref: Translation from Dutch to English: Google,
http://translate.google.com/transla...h-vermoeiden-op-zoek-naar-erkenning~a4370961/


Chronically fatigued looking for recognition
--------------------------------------------
A major study of chronic fatigue syndrome in 2011 led to much controversy. Now the fire flares up again after a remarkable statement of the British court.

The controversy between patients and scientists on chronic fatigue has reached a peak after a remarkable court ruling. A British court has determined that all the data from a study of treatments should be released against the disease at an Australian patient. The university has yet to end in question this week to appeal.

Patients have been around since the publication of that study, five years ago in The Lancet, serious doubts about the claims. The so-called PACE study, the largest study ever done on the effect can treat chronic fatigue, showed that patients can recover from the disease by two types of therapy: an exercise and a form of behavior therapy.


Contempt

The results received worldwide attention. Against chronic fatigue syndrome (CFS), where millions of people worldwide suffering, there was no cure. The disease is characterized by extreme fatigue but also by muscle and joint pain and memory problems. 'Chronically tired? Out and move. ' the newspaper headlines. Patients felt insulted by that message, they regarded the findings as a lack of recognition. They assume that their disease is not psychological but has a physical cause, and set their sights on the two British psychiatrists who suggested otherwise.

Remarkably, they were in recent years more and more support from scientists from around the world who openly voiced strong criticism of the study design, statistical analysis of the data and the interpretation of the data. The study could obviously not be blinded, so patients knew which treatment they received, and halfway they were told in a newsletter which treatments were a government commission favorite. The result was based on subjective data. All data eg from a walk test, could not support the findings. Criteria for participation in the study would have been dubious.

Forty professors scrheren The Lancet recently an open letter in which they insist that the results be reviewed by independent scientists. The study shows, according to them 'major flaws' and thus live 'serious concerns' about the reliability of the conclusions.

Attempts on the underlying data available, encountered long resistance from the concerned onderzoekeres and the university, the London Queen Mary University. The Australian CFS patient Alem Matt Voorhees ztte through to the British personal authority, which agreed with him a year ago. The university appealed to the court, but drew the short straw. The university believes that the release of the data damages the relationship of trust with the patient because of privacy has been promised to them. But the patient data as anonymous, according to the court that there are likely no problems.

Scientists found that the withholding of data at a time of open access can not. 'Good wetenscahp does not need protection,' that was the slogan of the activists during the trial. But Emeritus Professor Jos van der Meer, expert in the field of CFS, warns of the consequences of disclosure of research data. 'Put everything on the internet, there is always someone who discovers something you do every study a mistake, in this fixed too. It will go to details and I predict that it be enlarged in order to pay the entire study to the dump. ' On the availability of data from clinical trials is much to do, Van der Meer know. 'There is a widespread view that any conditions should be attached.'

Van der Meer said that the research leaders shared indeed in recent years at the request data with colleagues. 'But to give all data to your enemies.' Enemies? 'Yes, there are people who have apparently interest in this to find a bad study. It is a personal vendetta to be against two scientists of renown. '


Positive effect

Psychiatrists Sir Smon Wessely and Peter White are the wrong turn become the face taken by science according to patients. 'And that's really strange,' says Van der Meer, because of the effect of behavioral therapy has been much more research, and the conclusions were unanimous. His own research in the Nijmegen Radboud UMC took a few years for the British study also positively impact behavior. That which helps treatment, would also not say that the disease is Van der Meer emphasizes between the ears. 'Apparently there is a setting error in your brain and you can turn back to get going with the treatment.'

London University has more than one week to appeal, Alem Matt Voorhees let us know via email. The chance of this is small: the case can only go to a higher court if there has been 'an error of law' and the law is misapplied. Once the data to Matt Voorhees released, anyone can retrieve them. 'I am convinced that they do not gefoezeld researchers,' Van der Meer said.

-------------------------------------
Box: Again no access to research data
-------------------------------------

The American professor James Coyne, affiliated with the University of Groningen, has requested information from the PACE study. End he requested last year, researchers at King's College London to provide him data from a follow-up study published in 2012 in PlosOne, the cost-effectiveness of the treatments in question. The university refuses inspection. The letter of reply, which Coyne has put on his blog, the university wrote that Coyne has 'no serious reasons' that he only wants to use the data for a polemic and 'reputational damage' threat. That refusal has once again led to angry reactions from fellow scientists. 'If the university is looking reputational damage,' twittered the British professor Chris Chambers, 'then it is enough to clog research.'

--------
(c) 2016 Persgroep
 

J.G

Senior Member
Messages
162
De Volkskrant is a reputable, reasonably progressive paper. I appreciate the contextual criticism of Van Der Meer, who come across like a narrow-minded reactionary here. I particularly enjoy him tacitly admitting to errors in his own work.

Unfortunately, not a word about the recent Naviaux study in this article.

Some striking Van Der Meer quotes:
"Put everything on the internet, there is always someone who discovers something you do every study a mistake..."
Welcome to the digital age, bro. Your profession is opening up to outside scrutiny, so you'll have to start being accountable, just like everybody else.
"Apparently there is a setting error in your brain and you can turn back to get going with the treatment."
Oh yeah? PACE data, please! Thx.
 
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Cheshire

Senior Member
Messages
1,129
I think this is very telling:
Van der Meer said that the research leaders shared indeed in recent years at the request data with colleagues. 'But to give all data to your enemies.'

When the majority of the patients are seen as ennemies, there is a real problem.
The ability of a doctor saying such thing about the population he is supposed to help should be questionned.
And seriously.
 

Justin30

Senior Member
Messages
1,065
I think this is very telling:


When the majority of the patients are seen as ennemies, there is a real problem.
The ability of a doctor saying such thing about the population he is supposed to help should be questionned.
And seriously.

Unbelievable can u turn off my brain switch so I miraculously recover my health or how out those that cant even move or get out of bed.

This group is so ignorant....time to wake up Drs

The proof of this is biologicalal and not all in our heads stop denying the truth!
 

J.G

Senior Member
Messages
162
I think this is very telling:

When the majority of the patients are seen as ennemies, there is a real problem.
The ability of a doctor saying such thing about the population he is supposed to help should be questionned.
And seriously.

Yup. Van Der Meer equates scrutiny and oversight with hostility. If patients ask questions on the validity of study design and agitate against secrecy, they're in cahoots with the perceived enemy. Their well-being is irrelevant; all that matters is the turf war.
 

A.B.

Senior Member
Messages
3,780
Then the majority of the patients are seen as ennemies, there is a real problem.

I'm glad he's acknowleding that we are enemies. Some honesty at last. All their work is based on lies. The lie that Oxford criteria are a reliable definition of the illness. The lie that improvement on self rated measures without improvement on objective measures is evidence of improvement in health. The lie that GET is safe. The lies about patients suffering from irrational fears or other forms of moral failure. The lie by omission that is the willful ignorance about all the biological abnormalities that have been found in patients.

They are out of control and harming us. That's why we are enemies.
 
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Justin30

Senior Member
Messages
1,065
I'm glad he's acknowleding that we are enemies. Some honesty at last.

For this group this exactly the case we sick patients are your enemies.

Wouldnt it be nice have this comment beside...CFS is not a disease in the Canadian Grant proposal rejection.....
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Intrigued to know the meaning of 'gefoezeld' here:

Once the data to Matt Voorhees released, anyone can retrieve them. 'I am convinced that they do not gefoezeld researchers,' Van der Meer said.

Literally seems to translate as 'feathered' but I'm guessing there's a figurative sense to it. Maybe @Effi could offer enlightenment?
 

J.G

Senior Member
Messages
162
Dutch native speaker here.

'Foezelen' is an unusual word. It can be taken to mean 'mess with' or 'cheat'. Van Der Meer omits the object of the sentence, so what aspect of the study he refers to remains unclear. Presumably, he means the study in its entirety, i.e. no tampering with data, cutting corners, wilfully drawing erroneous conclusions, etc.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Dutch native speaker here.

'Foezelen' is an unusual word. It can be taken to mean 'mess with' or 'cheat'. Van Der Meer omits the object of the sentence, so what aspect of the study he refers to remains unclear. Presumably, he means the study in its entirety, i.e. no tampering with data, cutting corners, wilfully drawing erroneous conclusions, etc.

Ah, thank you, J.G. So he's just saying "I'm sure everything the PACE authors did is just fine"? We'll see ;-)
 

Effi

Senior Member
Messages
1,496
Location
Europe
Intrigued to know the meaning of 'gefoezeld' here:
It's not a very common word. It means something like 'secretly doing something you're not supposed to do'. Nothing illegal, but definitely in a grey area, i.e. against certain rules. I'd say it's similar in meaning to 'finagle' in English? Also, when I googled foezelen one of the first hits was foezelen.com, a website where you can arrange anonymous, naughty dates. I think that explains it enough, doesn't it? ;)
 

Solstice

Senior Member
Messages
641
A pity she doesn't go into further detail why those researchers want the data released and why there's so much controversy. While on the other hand v.d. Meer get's a lot of space to spew his nonsense.
 

TiredSam

The wise nematode hibernates
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2,677
Location
Germany
'And that's really strange,' says Van der Meer, because of the effect of behavioral therapy has been much more research, and the conclusions were unanimous.
Amongst a select group of back-slapping cronies reviewing their own and each other's work conclusions are unanimous, yes. If he'd care to cast his net a little wider than his own clique he'd find that scientists researching ME are far from unanimous, or they wouldn't all be signing letters to the Lancet.