Cure: A Journey into the Science of Mind Over Body by Jo Marchant

Mrs Sowester

Mrs Sowester

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Bob said:
Lots of discussion on Twitter. Jen Brea is getting stuck in, complaining about the (lack of) quality of the 'journalism'. Brian Vastag and Julie Rehmeyer also complaining directly to the authors. Actually, almost everyone on Twitter is complaining about the article.
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That explains it then - usually they keep these articles up as click bait, but they won't like to see themselves as puppets of the SMC one little bit.
Fingers crossed we may have the beginnings of our media breakthrough.
 
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Bob

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Interesting that the article acknowledges that GET has inherent dangers. Walking for just a minute too long would have devastating consequences and put the patient in bed for weeks. It doesn't seem like a very safe therapy. With this anecdotal report, and so many patients reporting harm from GET, no wonder it's such an unpopular therapy.
Guardian said:
She kept an activity diary and as the months progressed she was able to do more. “Walk two minutes around the block,” she recalls. “Then walk three minutes. But walking five minutes might put you in bed for three weeks.” She had to stick to the regime, doing no more and no less than the prescribed activity level, no matter how good she was feeling.

If she pushed herself too hard, she would crash. “It takes incredible discipline,” she says. “One slip-up and you are back to square one.” If she broke the rules and tried to do too much, she would start to feel her body go. “I’d feel hot from the feet up, almost like I was being poisoned. Then I’d be ruined for weeks.”
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Ecoclimber

Ecoclimber

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http://www.npr.org/sections/health-...and-virtual-reality-help-power-mind-over-body

"During the first part of the experiment, Marchant sat, without distraction, with her foot in a box of unbearably hot water. "It felt like a very intense burning pain on my foot when I just experienced it on its own," Marchant tells Fresh Air's Terry Gross.

But then Marchant put on noise-canceling headphones and began to play a snow-and-ice-themed immersive video game that had been developed specifically for burn patients. This time, when the researcher applied the same burning pain to her foot, she barely noticed it."

She fails to mention that her mind did not heal the scalding flesh nor did the mind heal the burning flesh of burn patients...smoke and mirrors. How long did that distraction last? Clinical trials of distraction vs. pharmacological relief over a period of time?
 
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D

Dolphin

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I previously saw this posted elsewhere on the internet. I saw it before that in a magazine for local group in England in the early- to mid-2000s. It shows PDW has a weird view of recovery, though it doesn't explain the big changes made in
the recovery criteria in the PACE Trial - he had these views about recovery when the recovery criteria were set:

"What do you class as recovery?

Peter White would say I'm a success story.
I would like to know what level other people are at whom he classes as having recovered.

To me if I'm recovered, I'm able to come off benefits, work full time, do my house work and have a life.

But when I said this he asked me: "Do you want to go back to the life that gave you ME?"

That's a cop out.

I disagree with his definition of recovery.

If you've improved significantly, to him that is recovery.

I don't believe in what they say 100%.

I believe you get ME and you just have to overdo it and the symptoms come back.

I can manage to a certain extent but part of it you can't control.

I know if I do too much I feel worse but according to them I bring this on by expecting to feel worse.

According to them this is not founded and irrational.

My belief system is holding me back.

They do not believe in any physical basis for the illness like a virus.

At the end of the day it's all very well to talk about attitude but I have a real illness which is more deep rooted.

I take what I need and don't give myself a hard time.

I don't blame myself.

Last time I saw Dr White I could tell he still thought it was partly to do with me.

He said,'Do you think it's down to you?' On my report he has written:
"[name] is making good progress. [Name]'s only remaining barriers are [name]'s illness beliefs"
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user9876

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Ecoclimber said:
http://www.npr.org/sections/health-...and-virtual-reality-help-power-mind-over-body

"During the first part of the experiment, Marchant sat, without distraction, with her foot in a box of unbearably hot water. "It felt like a very intense burning pain on my foot when I just experienced it on its own," Marchant tells Fresh Air's Terry Gross.

But then Marchant put on noise-canceling headphones and began to play a snow-and-ice-themed immersive video game that had been developed specifically for burn patients. This time, when the researcher applied the same burning pain to her foot, she barely noticed it."

She fails to mention that her mind did not heal the scalding flesh nor did the mind heal the burning flesh of burn patients...smoke and mirrors. How long did that distraction last? Clinical trials of distraction vs. pharmacological relief over a period of time?
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I seem to remember hearing about work done looking at using video games as pain relief and even doing small operations using them as an anesthetic with the theory being that the constant nerve signals associated with playing the game drown out other signals (whilst someone is concentrating on the game)
 
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worldbackwards

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Dolphin said:
I imagine there is a good chance that the CFS patient in the Guardian article would have had similar results five years on without doing GET. The long-term follow-up study in the PACE trial found no differences between the groups.
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If you can pace yourself and feel well enough to do a bit more, I don't really see the need for having someone sat on your shoulder, ready to tell you that it's all your fault if you fail. One wonders who actually gets the benefit from that and why. What that woman needed was a management programme, rather than someone to encourage her to witter on about her perfectionist traits.

One other thing that bothered me was her bringing Tim Noakes and all that 'central governor' bollocks into it (surely Gupta should sue). White doesn't believe any of that; why wasn't she prepared to bring his odious views out in full? Is it because blaming patients for everything doesn't fit her narrative of him as mind/body hero, fighting against the philistine patient hoards?
 
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Dolphin

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worldbackwards said:
If you can pace yourself and feel well enough to do a bit more, I don't really see the need for having someone sat on your shoulder, ready to tell you that it's all your fault if you fail. One wonders who actually gets the benefit from that and why. What that woman needed was a management programme, rather than someone to encourage her to witter on about her perfectionist traits.

One other thing that bothered me was her bringing Tim Noakes and all that 'central governor' bollocks into it (surely Gupta should sue). White doesn't believe any of that; why wasn't she prepared to bring his odious views out in full? Is it because blaming patients for everything doesn't fit her narrative of him as mind/body hero, fighting against the philistine patient hoards?
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What makes you think that White doesn't believe that? His big theory is interoception: that we pay too much attention to normal bodily signals.
 
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worldbackwards

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Dolphin said:
What makes you think that White doesn't believe that? His big theory is interoception: that we pay too much attention to normal bodily signals.
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Perhaps I haven't paid enough attention to Noakes, but his theory seems more ambiguous, that whilst he believe it can be behaved out of, it isn't behaved into as such. Whereas White puts it all in the patient from start to finish. But maybe I'm wrong, all these theories about something that doesn't exist tend to get a bit mixed up. It's like the difference between so many Trotskyite splinter groups.
 
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Ecoclimber

Ecoclimber

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By alluding to other experiments, it gives the credence of scientific validation when in fact it is everything but that. What was the degree of pain applied and for how long before the distraction wears off? She said "she barely noticed it." It does not heal or cure the inherent biological cause of the pain. What it does is effectuate LOCK-STEP-AND-HEEL the agenda of Wessely et el mind over body, positive belief psychology.

Another example in the NPR piece she states:""Even with altitude sickness, for example, if somebody at altitude takes fake oxygen, you see a reduction in ... prostaglandins. ... These actually work to dilate blood vessels and they cause many of the symptoms of altitude sickness."

Try using fake oxygen on Everest and your dead!
https://t.co/v1pvVHUs3B

I have a suspicion that this patient community will get hammered all the way to the time of the hearing. It is well known in politics that if you tell a lie often enough, people will begin to believe it especially if they are invested or hold in high esteem the person stating the lie.

I hope I'm wrong.
 
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Ecoclimber

Ecoclimber

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@halcyon
I'm not sure of the meaning of your post above? She was also a previous editor of Nature

PS: I am not diminishing the point on which distraction lowers pain thresholds to a certain level. What is not mentioned is the degree of pain and duration. Eg: on a Scale 1-10 distraction works for pain at this level for this many minutes in a clinical trial on this particular illness or trauma. It does not cure the underlying biological cause of the pain.

My concern is that this will spawn the already crowded field of quack practioners practicing bad science by claiming they can cure cancer and other illnesses with meditation, positive belief, bio feedback, virtual reality...Pac Man eating cancer cells...various electronic equipment, their own pills and supplements etc.
 
Ecoclimber

Ecoclimber

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Seems to have gone the route of Dr. Oz. Got a lot of flack over Reiki article in Nature. Writes for Mosaicscience - Wellcome Trust. I won't even mention her latest blog piece.
 
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