Media coverage of Matthees PACE recovery reanalysis: post links here

Cheshire

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Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.

Would any doctor continue to prescribe a drug which they had been told would benefit 20 per cent of patients with a specific illness, once the truth was revealed to be around 7 per cent, only one percent better than no treatment at all? You’d have to hope not and that concerned and angry doctors would then shout loudly that they had been lied to and that patients had endured years of pointless treatment.
The condition is Myalgic Encephalitis (ME) or Chronic Fatigue Syndrome (CFS) and the discovery that exercise plus psychotherapy are effectively useless was the result of a remarkable and very unexpected legal victory last month. It’s potentially a grave embarrassment for several senior psychiatrists and the Lancet, a respected medical journal.


http://healthinsightuk.org/2016/09/...fraction-as-effective-as-experts-claim-it-is/
 

Cheshire

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Uk mainstream journal at last:
Exercise and therapy cure for ME is ‘seriously flawed’
However, the study, which, since its publication in the Lancet, has been the focus of bitter dispute, has been defended by its authors and other scientists. The new analysis used the same data but a different definition for what constituted “recovery”. Philip Stark, professor of statistics at Berkeley, argued that this simple change converted a “finding into an unfinding” — showing that there was no benefit from exercise or cognitive behavioural therapy.

He conducted the re-analysis because he said the original authors had weakened the criteria used to judge the severity of symptoms. “It was lax to the point where an individual who would have been deemed ill on entry could have been considered healthy at the end, even if they had deteriorated,” he said.
Sadly ends with this:
Peter White, one of the original researchers, said he did not dispute Professor Stark’s methods, but added that the argument was about the definition of recovery. “They’ve used more conservative criteria. We thought people who rated their health as ‘much better’ or ‘very much better’ should be included. They used ‘very much better’. We said in the paper one major limitation is it is very difficult to define recovery.”

He was defended by George Lewith, professor of primary care at Southampton University, who was not involved in the original research. He said the field was in danger of becoming politicised. “I’ve worked in the area for ten years, and I’ve been appalled by what has happened. There’s a small group of people with fixed and opposing views, and they want to torture the data until it proves what they believe. I think there’s a great danger people will stop doing research because it’s so confrontational.”
And what about the SF 36 scores, Peter?

http://www.thetimes.co.uk/article/b0c9d588-84d8-11e6-9270-cf26736cb244
 
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Sidereal

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He was defended by George Lewith, professor of primary care at Southampton University, who was not involved in the original research. He said the field was in danger of becoming politicised. “I’ve worked in the area for ten years, and I’ve been appalled by what has happened. There’s a small group of people with fixed and opposing views, and they want to torture the data until it proves what they believe. I think there’s a great danger people will stop doing research because it’s so confrontational.”
Unbelievable. It's the PACE authors who tortured the data until they got the result they wanted. The reanalysis SIMPLY FOLLOWED THE TRIAL PROTOCOL.
 

user9876

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Unbelievable. It's the PACE authors who tortured the data until they got the result they wanted. The reanalysis SIMPLY FOLLOWED THE TRIAL PROTOCOL.
They are clearly trying to reinvent the past in the way they rewrote the protocol.

The question White needs to answer is which of the activities in the SF-36 physical function scale that are dropped by using a threshold of 60 would a recovered person not be capable of doing.
 

Sidereal

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They are clearly trying to reinvent the past in the way they rewrote the protocol.

The question White needs to answer is which of the activities in the SF-36 physical function scale that are dropped by using a threshold of 60 would a recovered person not be capable of doing.
It's so annoying that the journalists who interview White never challenge his spin. The quote makes the changes to the recovery criteria sound very benign when in actuality they brought the SF-36 criteria down to the level of functioning of a patient with congestive heart failure.
 

Yogi

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Click on link to zoom in


By Tom Whipple who said recently on Twitter after being asked by people here would do another article about PACE trial after the coverage of the Davis/ Naviaux study came out a few weeks ago. He complained that he would love to but lot of pressure on time and editors etc.

Not perfect but good start. Let's not criticise him but hopefully a good start for him to look a bit deeper.

Could be a bit better. Surprised Peter White now getting homoeopaths to defend him.

https://en.m.wikipedia.org/wiki/George_Lewithq


Professor George Lewith is perhaps the most prominent advocate of alternative medicine within quackademia, at least in Russell Group University. He claims to be a member of “The Complementary and Integrated Medicine Research Unit is within the School of Medicine at the University of Southampton.”.

http://www.dcscience.net/2011/02/18/george-lewiths-private-practice-another-case-study/


It looks like Lewith is the only one to defend PW and stick his neck out for him.:rofl::rofl:

Very surprised the old chestnut about unstable patients stopping researchers was still used. It was totally refuted by the court.


We seem to have got supporter, the CEO of Royal Statistical

 
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user9876

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It's so annoying that the journalists who interview White never challenge his spin. The quote makes the changes to the recovery criteria sound very benign when in actuality they brought the SF-36 criteria down to the level of functioning of a patient with congestive heart failure.
Even with the quote looking a bit deeper people are asked about changes to their health and if someone says they are "much better" White deems this as recovered but that is not the question being asked hence it is a strange interpretation.
 

Simon

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So 'much better' but explicity not ' very much better' is now recovery? Did they ask patients if they considered themselves recovered? Of course not. I happen to think patients, who live with this illness, are much better placed to judge recovery than reseachers, who are incentivised to find results that look as good as possible.

The BMJ » Blog Archive » Simon McGrath: PACE trial shows why medicine needs patients to scrutinise studies about their health

No researcher has the right to tell patients that some modest improvement is good enough to count as recovery. They should try living with the illness, and then see if they'd accept watered down versions of recovery for themselves.
 
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Valentijn

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Oh, I don't know. First I didn't have the option to add a comment, then I did but now I don't, so I don't know if you can comment with a free account or not, sorry.
I can't seem to. There's an existing comment, but hitting "reply" under it does nothing, and I don't see a way to make normal comments.
 

Yogi

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Jerome Burne has covered ME CFS for decades.

Here he is regarding the CMO report of 2002.

Battle fatigue
For ME sufferers, the bitter feud between the scientists as to whether it is a genuine physical complaint, or more a disease of the mind, has only added to the dispiriting nature of their ailment. After all, if even the experts don't know what's wrong with them, what hope is there? Jerome Burne meets the warring parties - and finds that, at last, they're discovering some common ground


Jerome Burne

Saturday 30 March 2002 02.08 GMT

https://www.theguardian.com/society/2002/mar/30/health.lifeandhealth

Wondering if he could publish in the guardian about PACE trial.
 
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"He was defended by George Lewith, professor of primary care at Southampton University, who was not involved in the original research. He said the field was in danger of becoming politicised. “I’ve worked in the area for ten years, and I’ve been appalled by what has happened. There’s a small group of people with fixed and opposing views, and they want to torture the data until it proves what they believe. I think there’s a great danger people will stop doing research because it’s so confrontational.”

Maybe someone should pass on to my old friend George that his old friend Jo thinks he is making a fool of himself. The only people with fixed views who tortured the data to prove what they believe were the PACE authors. If George does not understand the basic incompetence of the PACE trial design he has no business being a professor and should go back to being a first year student. The truth is that at last the PACE trial is being unpoliticised. It is now an issue of science and it is seen to be very bad science. If people who do bad science are discouraged by confrontation we should all give three cheers. Every single scientist from another discipline I have met who has encountered the PACE story agrees that the trial is hopelessly flawed. It is only the ME/CFS physicians who are frightened by not having something to recommend who support it.