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The PACE Trial Did Not Go Unchallenged for Five Years Margaret Williams 28th March 2016

lilpink

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http://www.investinme.org/IIME-Newslet-1603-01.htm

The PACE Trial Did Not Go Unchallenged for Five Years
Margaret Williams 28th March 2016


IiME Newslett March 2016:

On 21st March 2016 Rebecca Goldin, Director of STATS.org and Professor of Mathematical Sciences at George Mason University in Fairfax, Virginia, published her devastating critique of the PACE trial, asking in bewilderment: “How did the study go unchallenged for five years?” (http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/); others have been asking the same question.

However, the iatrogenic disaster that is the PACE trial did not go unchallenged for five years.

It is important that there should be an accurate record of the many challenges which were submitted by numerous people, including Professor Malcolm Hooper, but which were either ignored, dismissed, publicly ridiculed, denied outright or denigrated, for example, as in Nigel Hawkes’ feature article in the British Medical Journal: “Dangers of research into chronic fatigue syndrome -- Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition” (BMJ 2011;342:d3780 doi: 10.1136/bmj.d3780 Page 1).

Hawkes wrote that publication of the PACE results prompted a: “response to the Medical Research Council (MRC), which part funded the trial, and a shorter 43 page rebuttal to the Lancet. Both were written by Malcolm Hooper, emeritus professor of medicinal chemistry at the University of Sunderland, who branded the trial “unethical and unscientific.” He wrote: “Entry criteria were used that have no credibility; definitions and outcome measures were changed repeatedly; data appears to have been manipulated, obfuscated, or not presented at all (so it cannot be checked) and the authors interpretation of their published data as ‘moderate’ success is unsustainable.” Both the MRC and the Lancet have considered the submission and rejected it, the Lancet commenting that the volume of critical letters it received about the PACE trial smacked of an active campaign to discredit the research.
Continue reading here.
References:
http://www.investinme.org/IIME-Newslet-1601-01.htm
http://www.investinme.org/IIME-Newslet-1602-01.htm
 
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alex3619

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Logan, Queensland, Australia
The implied context is PACE went unchallenged by the wider scientific and medical communities. Its been a long hard road to get the scientific and medical communities to look at this. Suddenly they are realizing we were right all along.

Many of us have been fighting PACE since long before the trial was published. More since then. The demonization of an entire disabled community has a lot to do with being ignored.

Medicine is entrenched in argument by authority. Only a minority take the time to look at things more critically. The Evidence Based Medicine movement is also using authority far too much, and good science far too little. The medical community needs to wake up and realize its losing power by becoming disconnected from developing the tools to be critical thinkers. They probably think they are critical thinkers, all of them. Some are, a minority. The rest lack the skill set. They could learn, but first they have to realize they need to learn.
 

JohnCB

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Many of us have been fighting PACE since long before the trial was published. More since then. The demonization of an entire disabled community has a lot to do with being ignored.

Indeed. I remember the shock in the internet groups that I then frequented when the "study" was first announced. There was a real sense that we had been shafted by the MRC as we had understood they would be supporting much needed biological research. During a recent email tidy-up I found my own response, dated 26 July 2004, to Christine Llewellyn of the ME Association canvassing support for the PACE trial to be suspended. Needless to say I gave my support.
 
Messages
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Indeed. I remember the shock in the internet groups that I then frequented when the "study" was first announced. There was a real sense that we had been shafted by the MRC as we had understood they would be supporting much needed biological research. During a recent email tidy-up I found my own response, dated 26 July 2004, to Christine Llewellyn of the ME Association canvassing support for the PACE trial to be suspended. Needless to say I gave my support.

It makes me so sad and angry to read this. To think of all the biological research that could have been done since 2004....
These people are the worst of the worst.
 

Dolphin

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17,567

charles shepherd

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2,239
Indeed. I remember the shock in the internet groups that I then frequented when the "study" was first announced. There was a real sense that we had been shafted by the MRC as we had understood they would be supporting much needed biological research. During a recent email tidy-up I found my own response, dated 26 July 2004, to Christine Llewellyn of the ME Association canvassing support for the PACE trial to be suspended. Needless to say I gave my support.

The MEA organised a petition opposing the PACE trial at the very start and argued that it wasn't going to tell us anything that we didn't already know about CBT and GET and that the money would be far better spent on biomedical research into ME/CFS. I cannot now recall how many signatures we collected. If I have time later I will try and find more info - as this is now many years ago and we were not making much use of social media on the internet at the time.
 

charles shepherd

Senior Member
Messages
2,239
These days I don't think there are many UK investigative journalists.

I'm afraid that is a very valid point

Journalists of the calibre of Duncan Campbell, whom I used to regularly work with on health investigations:

http://www.duncancampbell.org/menu/journalism/newstatesman/newstatesman-1989/pretty poison.pdf

are no longer around in any number to do this type of work

Today's health journalists tend to have far too many health stories pouring into their in- boxes each day and no longer have the time to carry out in-depth investigations

Which is why they churn out spoon fed press releases a lot of the time without any critical analyse

There are a few honourable exceptions - Matthew Hill at the BBC is one of them
 

Yogi

Senior Member
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1,132
It is good to see summary of all the complaints and challenges from Prof Hooper and Margaret Williams from inception to date. I was wondering where Margaret Williams was recently as she hasn't written much. It is great to see them vindicated for all their concerns.

If anyone is in touch it with her t would be better if the links were hyper links so you can just click to go to the source.
 

jimells

Senior Member
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northern Maine
Indeed. I remember the shock in the internet groups that I then frequented when the "study" was first announced. There was a real sense that we had been shafted by the MRC as we had understood they would be supporting much needed biological research

This is exactly why so many advocates critical of the NIH intramural study are getting a feeling of "deja vu all over again". Who has the strength and time to spend another decade fighting another crap study?