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

[Sean]

Jo Marchant is an award-winning science journalist and author. She trained as a scientist and has a PhD in genetics and medical microbiology from St Bartholomew’s Hospital Medical College in London, and an MSc in Science Communication from Imperial College London.

And a previous editor on Nature.

Therefore she has absolutely no excuses for vomiting up such drivel.

 

[TiredSam]

Another example in the NPR piece she states:""Even with altitude sickness ...

I misread this as "attitude sickness ..."

I think I've had too much exposure to all this drivel, the brainwashing is starting to work

 

[Sidereal]

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.

That thought occurred to me as I was reading her account. Her version of GET sounds more like probing the boundaries of her energy envelope and doing as much - but no more - than she was capable of at any given time. Most of us are already doing this but if someone can't figure it out without a psychiatrist / authority figure instructing them on what to do, fine, let them eat CBT. I don't see any logical reason to attribute her "recovery" to GET. What kind of medical treatment takes 5 years to work? It's more likely that she gradually improved (as some of us do) over a long period of time and misattributed her improvement to whatever she happened to be doing at the time. I've personally had a near-remission lasting seven years (without doing any kind of treatment) where I functioned at a higher level than she described as her "recovery" but I would still have short flu-like crashes if I really overdid it. Unfortunately, when the disease comes back, it tends to be far more severe than the first time round.

 

[A.B.]

It's irritating that this person also promotes the myth of placebos being evidence for powerful mind body effects.

There seems to be a trend of attributing almost magical effects to placebos, I suspect in order to justify treatments that aren't better than a placebo. Perhaps also to sell crappy books to the ignorant masses.

Do these people realize that their behaviour is hindering progress?

 

[Valentijn]

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.

This is a good point. In the case of medications, they are considered very unsafe if there is a narrow margin between an effective dose and an overdose. If we applied the same standards to GET, it would be considered a shockingly risky treatment, and I doubt it would be licensed for use in ME patients.

 

[Violeta]

Do these people realize that their behaviour is hindering progress?

Yes, of course they do!

 

[Dolphin]

http://www.meassociation.org.uk/201...tigue-syndrome-the-observer-14-february-2016/

One thought on “‘It was like being buried alive’: battle to recover from chronic fatigue syndrome | The Observer | 14 February 2016”

1. 
   fish February 16, 2016 at 12:25 pm
   I have read this article carefully a couple of times. What strikes me is that actually the patient was using something much more like pacing/envelope theory – ie she was keeping within her energy envelope and making tiny changes as the envelope grew gradually over the 5 years of ‘treatment’. She still crashed sometimes and had to stop for weeks sometimes. ie she was pacing, she was not being pushed to do more than her body could take and to push on through crashes, as happens in GET. All the gobbledegook about altering beliefs and CBT seemed to have no impact on her treatment one way or the other, in other words, she was not using the ‘treatments’ of GET or CBT as described and carried out in the PACE trial. As many people find who are able to restrain themselves to true pacing and avoid push/crash, she gradually improved, so that after 5 years she is able to work part time. She is not fully recovered. There is no evidence from her treatment as described in this article that any psychological theory or treatment played any useful part in her partial recovery. What bothers me most about this story is that it is being used to justify the Peter White psychobabble, and he is getting another chance to pretend the PACE trial worked.

 

[TiredSam]

So she did the only thing that has a hope of working, the same thing we've all been doing for years, and now it's being rebranded as Peter White's invention and deliberately confused in the mass media with PACE, CBT and GET. Nice move psychobabblers.

 

[Snowdrop]

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?

And that is the really important point. What she goes on about is mere temporary distraction from something also temporary.
Within a context of her general robust health. She extrapolates from there to things way beyond what is reasonable.
She has no clue about what it is like to experience chronic ill health and how that might be different from some theory concocted from a simple experiment.

 

[Bob]

Edit: the tweets are new but the blog (that James links to) was posted on 11th Jan, before the Guardian article.

https://twitter.com/i/web/status/699652997824049152

And he retweeted this...

https://twitter.com/i/web/status/699662083198205953

 

[Sean]

So she did the only thing that has a hope of working, the same thing we've all been doing for years, and now it's being rebranded as Peter White's invention and deliberately confused in the mass media with PACE, CBT and GET. Nice move psychobabblers.

This. It is quite clear that pacing is slowly being appropriated and rebranded as GET so that the likes of White and co can claim a win and avoid embarrassing and career ending backdowns.

 

[worldbackwards]

This. It is quite clear that pacing is slowly being appropriated and rebranded as GET so that the likes of White and co can claim a win and avoid embarrassing and career ending backdowns.

But with added blame. You can't have a White intervention without him telling you that you're responsible for everything that goes wrong and he takes credit for the rest. And nobody remembers the long years we were told to fight through our symptoms, because that was probably our fault as well.

 

[ryan31337]

This. It is quite clear that pacing is slowly being appropriated and rebranded as GET so that the likes of White and co can claim a win and avoid embarrassing and career ending backdowns.

I'd assume that at least some clinicians on the front-line are probably doing this with the best intentions to the patient, not self-serving ones. From their point of view they can abide by the NICE 'treatment' guidelines but water the CBT/GET down so much that in practical terms it is helpful to the patient, in a suitable form.

Of course this may be helpful to the individual but has the side effect of being massively unhelpful to the group, perpetuating the theory that 'true' CBT/GET is what's making the difference.

This was my experience of an NHS ME clinic last year. Both Dr and Psychologist encouraged more rest, suspension of exercise and even wrote to my GP telling them to support me in being signed off. I was to resume gentle activities as and when I was able without pushing too hard.

 

[Bob]

Action for ME have published an interesting response to the Guardian article:
https://www.actionforme.org.uk/news...al&utm_source=twitter.com&utm_campaign=buffer

 

[ukxmrv]

They will be claiming to have discovered ART (aggressive rest therapy) next.

 

[worldbackwards]

Action for ME have published an interesting response to the Guardian article:
https://www.actionforme.org.uk/news...al&utm_source=twitter.com&utm_campaign=buffer

Are Action for ME in danger of becoming good? Blimey!

 

[Esther12]

I didn't think that response was good.

"Readers might easily believe that CBT and GET can help everyone with M.E. if only they would give it a try. But it doesn’t."

The author can easily claim that she did not imply that, and actually commented on White's results by saying: "While that’s still not a great success record, it showed that White’s approach was the best treatment available and demonstrated that recovery from the condition is possible."

The details are what matters and AfME don't seem willing to get in to them. There have been a couple of other examples over the last few years of what seem to be AfME trying to be better at standing up for patients, but just not being very good at it. I think that they did get totally misled about the nature of the controversies around CBT/GET, PACE, etc, and even if they are now starting to move in the right direction they've still got a long way to go.

 

[ukxmrv]

I've re-read the response from AFME and have different impressions each time.

What does stand out for me is that Sonya Chowdrey accepts that Samantha Miller is recovered and doesn't question that or look critically at her claims.

When I read the original Observor piece it seemed obvious that Samantha wasn't recovered at all i.e. "she has to be careful - getting too stressed can trigger her symptoms" - which is no where near a recovery.

 

[soti]

Did anyone see this oldish post from sciencebasedmedicine? Doesn't seem like there are comments from our crowd, though with so many it's probably pointless. But she cites Marchand's take without comment and as evidence that "Beliefs Matter".

https://www.sciencebasedmedicine.or...bos-alternative-medicine-and-patient-comfort/

 

[Esther12]

It always seems like Harriet Hall is the worst of the SBM lot (and thus inevitably the one who writes most of their CFS stuff). Not read that piece, and tbh, really can't be bothered with doing so.