11:57, John Peters wrote:
Simon,
I read your comments on stats.org with interest. I wonder if you wouldn't mind clarifying a few points for me, please.
First, you say:
they were using a overly harsh set of criteria that didn’t match what most people would consider recovery and were incongruent with previous work so they changed their minds
Could you say, please, on what basis you say 'what most people would consider recovery'? Is that grounded in any evidence, or just your own assessment?
Could you also say, please, to which previous work you are referring.
Second, you say:
routine outcome measure studies of which there are many
Again could you give some examples of these studies, please.
Third, you say:
If you want to use the original recovery criteria you can, but I think that the ones that the trialists finally decided upon are more realistic to patients and clinicians alike
Once more, could you say, please, on what basis you assert that?
Why would patients consider themselves recovered if they were worse off than on entering the study, are unable to do any more activity than before (CBT), are still not able to work, are still claiming benefits and are not fitter? Why would clinicians consider such patients recovered?
Fourth, you say:
this does not speak to the causes of CFS but only to management.
Are you saying that CBT and GET should not be described as 'treatment' for ME?
When you say 'management', do you mean management of the symptoms or management of the effects of the symptoms?
If you mean management of the symptoms, how can you be sure? How do you know CBT and GET are not just helping some patients manage the effects of the illness? Wouldn't that explanation better suit the marginal, self-reported effects and no objective benefit?
Since you agree these trials do not offer any evidence to the cause of ME/CFS, could you say on what evidence you claim ME is 'simply a belief'? Is your assertion based on anything more than your own, well, belief?
I understand you're busy, but you have once again entered the debate on ME, and I do think it's important that we know exactly what you're saying.
Thanks,
John.
On 24/09/2016 12:02, Wessely, Simon wrote:You can look up the papers yourself We wrote at least two. I reckon there are ten or more.
See pace FAQs For rest.
You are not asking me questions because you don't know the answers like other people do but simply to prove me dishonest or whatever and I am just getting tired of this game.
Am off on holiday. Am just totally fed up with this charade.
Simon
On 24/09/2016 12:16, John Peters wrote:Simon,
You give the impression of being very open when it suits you, but as soon as someone challenges you, you run away.
You also seem to use language like a politician: to obfuscate and to obscure, rather than to clarify.
I can assure you it's not a charade. This is very serious. Many people's lives have been destroyed by this illness. While I accept your intentions were genuine, you and others have caused considerable harm to very many people with your unevidenced assertions. Keith Geraghty and Aneez Esmail discuss these harms http://bjgp.org/content/66/649/437 and in the e-letters you will see some comments of my own.
Enjoy your holiday.
John.On 24/09/2016 14:14, Wessely, Simon wrote:I have just written a very long e mail starting with the words 'how dare you use the word unevidenced'.
But I have deleted it. It doesn't matter. It won't do any good. The relentless campaign will continue - against the wrong people, the wrong cause and the wrong target
Nothing I can do about it. I will continue to stick my head above the parapet and defend good science because most people just too baffled, or too scared. I know for sure it won't make any difference at all to the campaigners, but that's not who I am talking to. I am talking to the kind of people I see in my clinic.
Simon
On 24/09/2016 14:40, John Peters wrote:Simon,
Many times I have asked you for the evidence on which you base your assertion that ME is 'simply a belief'. Never have you answered me.
When I ask for the evidence on which you base your assertions in the stats.org piece, you refuse to answer.
Each time the theory for the CBT/GET model has been tested over the last 30 years, there has been no evidence for it: ME is not depression; patients' belief it's caused by a virus makes no difference; patients do not respond more to placebos; patients do not fear exercise; the illness is not physiological deconditioning.
The collection of data in the PACE trial is flawed (criteria and selection of patients), but even when the bias is toward the CBT-GET model, there is no objective difference for patients, and there is no difference at all after 2 years or more.
Everyone accepts that since psychotherapy cannot be blinded, there is a danger of picking up noise in clinical trials. There is also, as I said, a chance that a few patients find CBT and GET help them manage the effects of their symptoms, and some of the self-reported 'improvement' may be down to this better management of the effects.
Where is the evidence that CBT and GET actually treat the illness? If an assertion is made, then it's incumbent on the person who makes that assertion to provide the evidence. And all the evidence there is, is perfectly well explained away in the manner I have said.
Meanwhile, the NIH, the IOM and the AHRQ have all said what I say: there is no evidence that ME is simply a belief; there is no evidence that CBT and GET are effective treatments. If you say I'm wrong to say the BPS model is unevidenced, then so are all those agencies, which represent the US medical establishment.
I am not trying to trick you. I am not trying to show you're dishonest. I am trying to show that when your points are challenged and your language is clarified, you are, bluntly, wrong.
John.