Steven Lubet: Trial by Error: Professor Sharpe's intemperate remarks for whom is he speaking?

Thank you

 

I think the trial minutes are very valuable in this regard

 

A most enjoyable read. Loved the Louis XIV reference. I can only assume the question posed at the end:

is rhetorical, to highlight that the over-generous assumptions at the start of the article can't be true. The answer to the question is that none of the BPS school ever even attempt to reply on the merits, they have a policy of labelling and insulting anyone who criticises them, or, as the ranks of their critics have recently been swelled by an increasing number of academics, scientists, journalists and politicians with a higher status than that of lowly patient they can just get away with abusing, blocking them or otherwise terminating the conversation.

For example, this is what Mike Godwin got from Wessely on 15th June:



And this is what he got from Sharpe on 17th June:



Even though that was it for Mike Godwin, both Wessely and Sharpe hung around on twitter for days afterwards to bicker with people they presumably consider softer targets (which is everybody else - lucky Mike Godwin!)

So their tactics are label, smear, belittle, insult and abuse, and if you can't get away with that, withdraw. Simon is more disciplined in this approach than Sharpe. So to get back to the original question, far from disassociating himself, it is in Simon's interests to let Michael Sharpe have at it. Either he will end up learning to do it properly to Simon's high standards, or he will make a complete ass of himself and take all the flak Simon should be getting. Heads Simon wins, tails Sharpe loses. Simon is just that kind of guy.

And we haven't even mentioned Esther ...

 

Who is he speaking for(?)
"
A statement to Newsbeat from some of the country's leading ME researchers and clinicians* says: "These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life."

It goes on to say that using GET "is based on good evidence from multiple studies and randomised controlled trials showing that these treatments are safe and useful for some patients.

"Right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them."


*This is a combined statement from: Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology and Neuroscience (IoPPN), King's College London; Prof Esther Crawley, Professor of Child Health, University of Bristol; Prof Paul McCrone, Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London; Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford and Prof Sir Simon Wessely, Chair of Psychological Medicine, King's College London. "

actually I just spotted something from that statement:
"these treatments are safe and useful for some patients",

this could be read as "safe [and useful] for some patients" ergo not safe for others(?)

 

GET is not safe for any ME sufferers, including mild. If they had been asked to find the most effective way to make a mild sufferer moderate, and a moderate sufferer severe, GET would be an appropriate answer.

It might be safe for patients suffering from something else, but why should anyone involved in ME research be interested in that? Putting a plaster cast on my leg is safe and useful for some patients, especially if they are suffering from a broken leg, but so what? That doesn't make it an appropriate treatment for ME, and having to lug a cast around would probably make my ME worse too, which would be especially annoying if I didn't even have a broken leg.

 

Indeed. Our time is now

 

Yep.

 

Just got this image in my head of you in an ME clinic. Doctor: Would it help if we broke your leg?

 

I think ages ago I suggested the following response on the "annoying things people say thread":

Annoying person: I wish I could lie around all day like you
ME sufferer: I can break your fucking legs for you if you want

I haven't had any feedback from anyone who's used it yet.

 

Is there any evidence from any trial that people with ME/CFS significantly increased what they could do following these therapies?

They don’t like us using anecdotes, but when challenged on these therapies they point to how they’ve helped so many people in their clinics. I don’t think they can point to their trial for support for that comment though.

 

We had this from Sandford at the RSM meeting a year or two ago. The idea is that you have to have some treatment otherwise you might have to tell the patients that you have nothing to offer and that would never do. It is an indirect admission that in fact the treatment does not work. If it did this argument wouldn't even be raised.

 

And if you had to admit there was essentially nothing , you might have to think about seriously funding some research....

 

Yes, instead of being fobbed off with bull***t therapies that blame patients for being unwell and make many feel worse, I would much rather be told:

“Although you meet the diagnostic criteria for ME/CFS, we don’t yet understand the pathology of your condition, and there are no proven effective treatments. However, it is important that we continue to see you regularly so that we can monitor your condition, help to manage some of your symptoms like pain and sleep disturbance, offer you practical and psychological support to help you cope with your illness and disability if you need it, and to improve our understanding of your condition through close observation. If you would like to volunteer, we would also like collect data and samples for the purposes of research. There may also be opportunities to participate in clinical trials and to try experimental treatments. Please be assured that we understand what you are going through. We are doing everything within our powers to try to further our understanding of the pathology of your condition, and it is only a matter of time before diagnostic tests and effective treatments are developed. In the meantime we are always here if you need to speak to anybody about any aspect of your illness – and if you’re not well enough to come to see us, we will come to see you.”

Of course, such a statement would not be true. But it should be. And it would be refreshing to hear.

[edit – typo]

 

+1

The closest i have gotten once which was not terrible was about this:

The resident then added Hopefully someday we will have more