Sorry. No criticism intended. Just meant that it might not have been obvious to Charles that there was an existing thread when he started his. Your title is fine.Do you want me to change it? I thought it had a nice ring...
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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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Sorry. No criticism intended. Just meant that it might not have been obvious to Charles that there was an existing thread when he started his. Your title is fine.Do you want me to change it? I thought it had a nice ring...
I'll add a bit to it, should solve all problemsSorry. No criticism intended. Just meant that it might not have been obvious to Charles that there was an existing thread when he started his. Your title is fine.
Isabel Hardman has just replied to this email
I have asked her if I can publish her reply
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: xxxx
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
The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.
Because no good journalist is a one-source writer. Any writer, even a non-professional, knows you don't use only one source and take whatever it says as the absolute truth. That's regurgitation, not writing.
Americans don't consider Harvard or Yale or Stanford publications to be inarguable. It's about the quality of the person or the argument, not the title or the name.
What's with all this deference to self-proclaimed authorities?
Isabel Hardman has said I can publish her reply:
However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.
Is it not peculiar that for people with psychiatric illness like paranoid schizophrenia you cannot go around complaining that they are harassing you but for ME you can? - because they have a, er... , an illness based on irrational beliefs that needs treating with psychotherapy.
Hence NICE isn't based on PACE, and will probably need to be brought down separately.
The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.
Is it not peculiar that for people with psychiatric illness like paranoid schizophrenia you cannot go around complaining that they are harassing you but for ME you can? - because they have a, er... , an illness based on irrational beliefs that needs treating with psychotherapy.
I'd had some helpful discussions with Action for ME in the past few months
I understand the disputes over the PACE trial and tried to set those out.
Isabel Hardman said:However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.
Yep, I very much agree. I'm disappointed with the reply. There doesn't seem to be much self-awareness or insight into the wrong that the spectator has carried out. It's all about the patients.And her reply is that despite how important this is to her, and despite the facts of the case - very nicely set out by yourself and Prof Edwards - she's going to run off and sulk becasue she can't bear that anyone might have responded to her appaling hit-piece in anything other than a 100% perfectly grovelling tone-of-voice..
https://mobile.twitter.com/Richard56/status/661497035594575872A brilliant German word: "verschlimmbessern," which means 'to make something worse by trying to improve it'. Happens everyday everywhere.
And don't forget, Jonathan, that not only is the methodology bad, but the results for all the outcomes (objective and subjective) are now null! (Or not clinically useful for the walk test after GET.)I tried to post this on Harman's comments:
Dear Isabel,
I am afraid even you have got it wrong. I am a retired professor of medicine at UCL and have a lot of experience with designing therapeutic trials. The PACE trial is completely valueless because it breaks the most basic rule of reliable trial design - it is unblinded and has subjective end points. Ask any trials designer and they will tell you this is a waste of time. The fact that Oxford University is involved means nothing - there are people who do not understand what they are doing in all major universities.
The reason the patients are vociferous is that they are being forced to accept very poor science. If I Had ME and realised just how bad this trial is I would be spitting blood as well. This is the Emperor with No Clothes in Spades. Just sit next to a professor of clinical pharmacology at dinner sometime and ask about this trial - it is about time the psychiatry profession realised they can no longer get away with this sort of rubbish..