adreno
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Rod's back! Coverage in The Spectator, 2nd November
- Thread starter worldbackwards
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Jonathan Edwards
"Gibberish"
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I see no prospect of that. The peer review system is not a good form of democracy.
Jonathan Edwards
"Gibberish"
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The trouble with mentioning the other problems is that you then get a response to the trivia - as in the response to Tuller. I think we need to say 'this is the basic flaw and nothing can mitigate it'. The basic flaw is something all trial designers have to agree on. Nobody can deny it once it has been pointed out. The only reason that the trial has survived is that nobody in clinical pharmacology has ever heard of it. They have never been asked to comment. It was obvious to me that the trial was no use as soon as I heard about it. The message needs to get across at that level.
Did either of you ask her directly to what extent she is just acting as a spokesperson for the briefings that the SMC hand out, and is she aware of the connections with the SMC and the researchers and proponents of PACE ? If she is genuine she'd have a good hard think about that.
Bob
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I wonder if @viggster might have any thoughts?
Bob
Senior Member
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I've read that the US TV stations are like our newspapers, and that US newspapers are more like our TV news. We can't trust our newspapers: they are highly competitive, and will say anything to pander to their readers' biases; they don't worry about conveying any facts. They just want to be sensationalist, to sell copies, and they are often political propaganda sheets, esp at election time. But our TV news has a more professional feel to it; it's more low key and more balanced. (Although whether it's trustworthy or not is another matter.)
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Yeh fair enough - I completely see your point and that's why I originally wrote a piece pretty much just about the PACE stuff but, like I say, was pushed in the other direction. However, to be fair to my editors, they DID include a scientific fact sheet about ME which backed up my points and in which they used a lot of the information I had included in an earlier draft of the article (although I did have to nag and nag for some changes) and they did include criticisms of PACE in that. The team behind the piece I wrote was a different one to the news team and there didn't seem to be a problem with one story contradicting an earlier one. Another point is that they care a lot, as I'm sure you know, about making pieces readable and not too 'scientific' for lay readers and it is quite a tricky situation to explain in lay terms without using a lot of acronyms etc. that need explaining. Again, I'm not defending the Telegraph's earlier, appalling article, just trying to work out where we can go from here and how we can use their awful reporting to our advantage.
Bob
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I didn't mention the SMC. In response to me pointing out her factual errors, she did say publicly on Twitter that Prof Sharpe had OKed her (factually inaccurate) text re the new study indicating that CBT/GET were better than SMC. I suggested that she vociferously protested about being fed inaccurate information for her article!
I know her article was dreadful, but I honestly believe she listened to me. She certainly engaged with myself and other members of our community and then added the 'PPS' text. I hope she learned a lot yesterday. I think she genuinely wanted to provide a counter-balance to Liddle's rant, and thought she was doing a helpful job. And she said on Twitter that she has a personal interest in the subject, but didn't specify what that is. I think we'll have to judge her on her next article about ME to see if she genuinely listened. She seemed genuine to me, but I guess I can't know that for certain.
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Bob
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Actually, I think it's the personal stories that will win the public over in the end. People often struggle to understand abstract ideas, and aren't very interested in articles that say "exercise is good for..." this that and the other. But everyone can relate to genuine personal stories about struggling with major health issues. My parents read the personal story in the telegraph and found it very interesting and helpful. It helped them to read about someone else in my situation. The way it was written, and the accompanying photos, enabled them to engage with the story, because it was so personalised.
A.B.
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There is room for both personal stories and discussing pure science. And I think we need both.
I think this is a great idea and would be an excellent start in publicizing this issue. It's something that could gain real traction and the the start of others looking more closely. Also a simply written article by a respected person like yourself could be something patients could bring to doctors to that might give them some pause for thought.
I have been ill to the point of being bed bound for years and even been referred to the hospice services at one point. I recently attended a doctor who was very impressed with the PACE trial and told me that when I was so deathly ill I should've been taken into hospital for physiotherapy to start on the road to exercise as being in bed "makes you tired". I have had physio at one time during my illness,it left me so ill I could not sit up for over a year after. This Dr would not listen to my experience or to me when I told him I really wasn't "tired" during that time.It frightened me so much,I feel exercise would have killed me at the time. Patients need to hear a rebuttals of this trial too before they are willing victims of it.
Please do consider the article. Thank you so much.
CantThink
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I am inclined to agree given how society worships doctors, academics etc. It seems as if an article from a respected scientist or doctor would be more favourable and carry more clout than patient ones. Sadly...
We need personal stories, science, and political strategising too.
The end goal is not just to say "PACE is poop", but to have everything that is built on PACE to come tumbling down with it.
That means a revision of the NICE guidlines, clear statements from government bodies and charities, a re-education campaign throughtout the whole of the NHS, the removal of CBT and GET as treatments, proper funding for medical research, and some very public apologies from academics, doctors and the press who have been complicit with this whole charade for far too long now.
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What we don't need more of is the articles written by science editors only reporting pro PACE and repeating the PACE Trial authors derogatory mythmaking about the patients. While scraps of more factual reporting gets through only in human interest interviews with patients in the Lifestyle sections of papers, and in the Comments sections, if they are 'allowed'.. The PACE Trial authors' statements are accorded authority by being interviewed/reported on by the science editors, gives them status. But the facts stated by patients in interviews for human interest/lifestyle articles can be portrayed as 'just the patients views'. No status at all. Thats a tricky tactic from our newspapers.
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The current NICE guidelines were written in 2007, with the review of the relevant research evidence completed in 2005. Hence NICE isn't based on PACE, and will probably need to be brought down separately.
charles shepherd
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Spectator blog on the PACE trial results
UK readers will be familiar with the nice Mr Liddle….
http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/
UK readers will be familiar with the nice Mr Liddle….
http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/
charles shepherd
Senior Member
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Dear Ms Hardman
Re: http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/
I would be very happy to also speak to you about the position that The ME Association takes on the PACE trial, CBT, GET etc
You may find it helpful to look at our press statement on the PACE trial, which has been quite widely used:
http://www.meassociation.org.uk/201...for-chronic-fatigue-syndrome-28-october-2015/
It's also worth reading the comments below from one of a growing number of well respected researchers and clinicians who take an equally critical view of the PACE trial
Having worked in hospital psychiatry, I know that mental illness is just as real and horrible as physical illness
There is no intention to denigrate psychiatric illness
Our dispute is with an influential group of psychiatrists and their views on the causation and management of this illness
The key point we are making is that ME/CFS is NOT an homogenous condition - so adherence to a very simplistic psychosocial model of illness causation (ie abnormal illness beliefs and behaviour + deconditioning) and management has meant that biomedical research not been given the priority it deserves.
As a result, far too many people with ME/CFS are being/have been given a treatment that is either ineffective (ie CBT) or even harmful (ie GET).
If you have time, please also have a look at this report from the most recent Research Collaborative conference that was held in Newcastle last month - as it does paint a very different picture to the psychosocial model of causation and management:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
Regards
Dr Charles Shepherd
Hon Medical Adviser, MEA
Tel: xxxxx
Comments from Prof Jonathan Edwards, UCL:
I would like to put on record a summary of the reasons why I think the PACE trial is valueless, in the light of the recent follow up publication. I am happy to have this summary quoted or reproduced in any public medium.
PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is.
The only possible mitigation of this flaw would be if:
1. There were no acceptable alternatives to a subjective primary outcome measure, and
2. The authors fully understood the nature of the flaw and the reasons why it is so serious, and
3. The authors were meticulous in trying to avoid all forms of bias that are likely to arise from the flaw.
It has been apparent from the outset that alternative objective endpoints were available. These might not be ideal in a blinded study (the blinded Norwegian rituximab study chose a subjective end point for preference) but an objective primary endpoint would have been practical. The objective endpoints in PACE used as secondary measures tended to show no difference in outcome.
The authors (and colleagues) have repeatedly indicated in public that they do not understand the flaw in the PACE trial design, as made clear by claims that the study is ‘robust’ and of high design quality. Moreover, the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias. (The details are well documented but are secondary to the main problem.)
The recent follow up study may be of some use in confirming the sensible conclusion to draw from the objective measures used in PACE – that it provides no evidence for any benefit from CBT or GET. It strengthens the case by suggesting that at longer term follow up even the subjective measure differences disappear. It also highlights again the authors’ lack of understanding of trial design problems. Moreover, as outlined by Dr James Coyne, it provides further evidence for the authors’ tendency to continually introduce bias in their analysis, apparently through a lack of understanding of basic data interpretation and statistics. One might expect errors of this sort from a clinical trainee, but not from a professional research team.
I am surprised and troubled that clinical and research colleagues in the ME/CFS field have said so little about the problems with this study. It has been left to David Tuller and James Coyne to raise the issue again. Regardless of other issues relating to the illness (that have been grossly misrepresented in the popular media recently) it needs to be recognised and agreed that the PACE study is not a suitable evidence base for clinical practice guidelines.
Jo Edwards
Professor Emeritus, Dept Medicine, UCL
Re: http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/
I would be very happy to also speak to you about the position that The ME Association takes on the PACE trial, CBT, GET etc
You may find it helpful to look at our press statement on the PACE trial, which has been quite widely used:
http://www.meassociation.org.uk/201...for-chronic-fatigue-syndrome-28-october-2015/
It's also worth reading the comments below from one of a growing number of well respected researchers and clinicians who take an equally critical view of the PACE trial
Having worked in hospital psychiatry, I know that mental illness is just as real and horrible as physical illness
There is no intention to denigrate psychiatric illness
Our dispute is with an influential group of psychiatrists and their views on the causation and management of this illness
The key point we are making is that ME/CFS is NOT an homogenous condition - so adherence to a very simplistic psychosocial model of illness causation (ie abnormal illness beliefs and behaviour + deconditioning) and management has meant that biomedical research not been given the priority it deserves.
As a result, far too many people with ME/CFS are being/have been given a treatment that is either ineffective (ie CBT) or even harmful (ie GET).
If you have time, please also have a look at this report from the most recent Research Collaborative conference that was held in Newcastle last month - as it does paint a very different picture to the psychosocial model of causation and management:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
Regards
Dr Charles Shepherd
Hon Medical Adviser, MEA
Tel: xxxxx
Comments from Prof Jonathan Edwards, UCL:
I would like to put on record a summary of the reasons why I think the PACE trial is valueless, in the light of the recent follow up publication. I am happy to have this summary quoted or reproduced in any public medium.
PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is.
The only possible mitigation of this flaw would be if:
1. There were no acceptable alternatives to a subjective primary outcome measure, and
2. The authors fully understood the nature of the flaw and the reasons why it is so serious, and
3. The authors were meticulous in trying to avoid all forms of bias that are likely to arise from the flaw.
It has been apparent from the outset that alternative objective endpoints were available. These might not be ideal in a blinded study (the blinded Norwegian rituximab study chose a subjective end point for preference) but an objective primary endpoint would have been practical. The objective endpoints in PACE used as secondary measures tended to show no difference in outcome.
The authors (and colleagues) have repeatedly indicated in public that they do not understand the flaw in the PACE trial design, as made clear by claims that the study is ‘robust’ and of high design quality. Moreover, the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias. (The details are well documented but are secondary to the main problem.)
The recent follow up study may be of some use in confirming the sensible conclusion to draw from the objective measures used in PACE – that it provides no evidence for any benefit from CBT or GET. It strengthens the case by suggesting that at longer term follow up even the subjective measure differences disappear. It also highlights again the authors’ lack of understanding of trial design problems. Moreover, as outlined by Dr James Coyne, it provides further evidence for the authors’ tendency to continually introduce bias in their analysis, apparently through a lack of understanding of basic data interpretation and statistics. One might expect errors of this sort from a clinical trainee, but not from a professional research team.
I am surprised and troubled that clinical and research colleagues in the ME/CFS field have said so little about the problems with this study. It has been left to David Tuller and James Coyne to raise the issue again. Regardless of other issues relating to the illness (that have been grossly misrepresented in the popular media recently) it needs to be recognised and agreed that the PACE study is not a suitable evidence base for clinical practice guidelines.
Jo Edwards
Professor Emeritus, Dept Medicine, UCL
worldbackwards
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Do you want me to change it? I thought it had a nice ring...
charles shepherd
Senior Member
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Apologies - the title did not indicate what was being discussed! Could someone amalgamate the two discussions?