Dear All,
I have just been called by Mr NICE himself. I was taken aback a bit, I must say. Someone had mailed him a link to my BLOG, and he actually liked what he saw. He didn’t like my criticism, but he liked the lay out and so. Before I could advise him to speak to Mr GOOGLE and his mates, he asked me a very serious question. And when I say very serious, I mean dead serious. All the cars in the street stopped, all the pedestrians waited outside my window, and it was suddenly really quiet. So quiet that it was very NICE for my hypersensitivity to noise but also a bit scary. They even stopped calling me lazy. I have been bedbound for a long time, I have no idea what my jogging shoes look like, let alone feel like. Of course I have seen them, but they don’t seem to be mine, really strange. But now that I can’t use them anymore I’m lazy. Never was, never been lazy before, but now I am. So I was even more surprised to get his call.
But anyway, he asked me if I would be interested in a Professor ship in ME. Before I could answer, he also said, but it will be at the same place as the professor who says that all patients with ME are LOONIES. We thought that if we move him to the south end of the building and you get the north end, that the University will be more balanced. Being bedbound wasn’t a problem. But there was one tiny tiny little other problem, he mentioned, when I asked him about remuneration. The government has allocated eleven million pounds for ME, but all will go to the CBT gang.
He also mentioned the PACE Trial. Apparently this is costing one or one and a half million pounds to see if CBT, GET (Graded Excercise Therapy) and so work for ME. It will be compared against pacing and so. Will they see if people get back to work as a measure of success? No, they will just ask them how they feel. First they learn them to expect less from life, and then the answer will be that they expect less from life. The conclusion from the trial will then be that CBT works best. You wouldn’t think that spending a million or more on this trial is money well spend, if you know the outcome beforehand, but the investigators will disagree. Obviously. The interesting thing is, that all twenty five or more of them are CBT fans. I personally would support Chelsea, Man U or Liverpool but they think CBT is best.
I tried to post the following as a response on the BMJ (British Medical Journal) site to the editorial about the NICE guideline. But they didn’t place it as it didn’t fit in their CBT community delusion. So do NOT think for a second that the BMJ is unbiased.
“To be perfectly honest, I'm very confused about CBT. In the PACE Trial it says that the basis for CBT is: "Cognitive behaviour therapy. This therapy is about examining how thoughts, behaviour and CFS/ME symptoms interact with each other." Or at least that is what it says on their homepage, if you read on though, and click on trial information, it says: "CBT will be based on the illness model of fear avoidance."
Nijmegen says it is to reprogramm the brain of ME patients, so they no longer think it is a physical illness.
And NICE states, that CBT is to help you cope with the disease. So even the CBT people have three very different ideas about CBT.
So how, apart from all the other problems/errors with CBT trials, can you compare them?
It is like orthopaedic surgeons talking and comparing RATT. Which means, Ruptured Achilles Tendon Therapy. They all say they use RATT. But one group of surgeons doesn't do anything, the conservative approach, the others put the leg in plaster for 6 weeks and the third group uses surgery. But they all call it RATT. If I would then advocate RATT, everybody would start to protest or laugh, but with CBT this apparently is no problem at all. And we even call this evidence based. Interesting concept.
Competing interests: I try to read articles with a critical eye.”
But like I said, too many competing interests at the BMJ to place a response like this.
I have just been called by Mr NICE himself. I was taken aback a bit, I must say. Someone had mailed him a link to my BLOG, and he actually liked what he saw. He didn’t like my criticism, but he liked the lay out and so. Before I could advise him to speak to Mr GOOGLE and his mates, he asked me a very serious question. And when I say very serious, I mean dead serious. All the cars in the street stopped, all the pedestrians waited outside my window, and it was suddenly really quiet. So quiet that it was very NICE for my hypersensitivity to noise but also a bit scary. They even stopped calling me lazy. I have been bedbound for a long time, I have no idea what my jogging shoes look like, let alone feel like. Of course I have seen them, but they don’t seem to be mine, really strange. But now that I can’t use them anymore I’m lazy. Never was, never been lazy before, but now I am. So I was even more surprised to get his call.
But anyway, he asked me if I would be interested in a Professor ship in ME. Before I could answer, he also said, but it will be at the same place as the professor who says that all patients with ME are LOONIES. We thought that if we move him to the south end of the building and you get the north end, that the University will be more balanced. Being bedbound wasn’t a problem. But there was one tiny tiny little other problem, he mentioned, when I asked him about remuneration. The government has allocated eleven million pounds for ME, but all will go to the CBT gang.
He also mentioned the PACE Trial. Apparently this is costing one or one and a half million pounds to see if CBT, GET (Graded Excercise Therapy) and so work for ME. It will be compared against pacing and so. Will they see if people get back to work as a measure of success? No, they will just ask them how they feel. First they learn them to expect less from life, and then the answer will be that they expect less from life. The conclusion from the trial will then be that CBT works best. You wouldn’t think that spending a million or more on this trial is money well spend, if you know the outcome beforehand, but the investigators will disagree. Obviously. The interesting thing is, that all twenty five or more of them are CBT fans. I personally would support Chelsea, Man U or Liverpool but they think CBT is best.
I tried to post the following as a response on the BMJ (British Medical Journal) site to the editorial about the NICE guideline. But they didn’t place it as it didn’t fit in their CBT community delusion. So do NOT think for a second that the BMJ is unbiased.
“To be perfectly honest, I'm very confused about CBT. In the PACE Trial it says that the basis for CBT is: "Cognitive behaviour therapy. This therapy is about examining how thoughts, behaviour and CFS/ME symptoms interact with each other." Or at least that is what it says on their homepage, if you read on though, and click on trial information, it says: "CBT will be based on the illness model of fear avoidance."
Nijmegen says it is to reprogramm the brain of ME patients, so they no longer think it is a physical illness.
And NICE states, that CBT is to help you cope with the disease. So even the CBT people have three very different ideas about CBT.
So how, apart from all the other problems/errors with CBT trials, can you compare them?
It is like orthopaedic surgeons talking and comparing RATT. Which means, Ruptured Achilles Tendon Therapy. They all say they use RATT. But one group of surgeons doesn't do anything, the conservative approach, the others put the leg in plaster for 6 weeks and the third group uses surgery. But they all call it RATT. If I would then advocate RATT, everybody would start to protest or laugh, but with CBT this apparently is no problem at all. And we even call this evidence based. Interesting concept.
Competing interests: I try to read articles with a critical eye.”
But like I said, too many competing interests at the BMJ to place a response like this.
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