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

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
Marchant buys some placebo pills online and takes one for a headache. 20 minutes later, her pain subsides. She knows it isn’t a scientific trial, but she feels empowered because her own mind was able to make her feel better.
https://www.sciencebasedmedicine.or...bos-alternative-medicine-and-patient-comfort/
Maybe Marchant's placebo response to the pill she took for headache was because she drank some water to wash it down? I know that if I have a headache it is almost always cured by a glass of water, and that's not placebo, it's because I'm dehydrated (ETA: I don't have ME).

It's been quite an eye opener to me these past few days to see how voodoo is increasingly being tolerated by people of science. Medical research must be so under-funded globally for such intelligent people to be selling their integrity in alliances like these. Tell me I'm wrong...
 
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Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
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.

Yes, "this" indeed. I was emotionally appalled that White was basically stealing Stacey Stevens's therapeutic approach without citing her, thus still allowing himself to use her work to repackage and promote his theory (using the Guardian as a platform for it, no less and Marchand as his stenographer) that is the opposite of what Stevens & Workwell Foundation are objectively proving. Intellectually, however, I found it fascinating that he's basically giving into what patients have been saying all along: GET -- as he/Bavington/et.al doesn't work but pacing/energy envelope does. As others in other threads have noted also, I had noticed this with PACE's GET manual that it was far closer to the sort of pacing we all do than is the APT. It reminded me of how pharmaceutical companies underpower drug trials by using Old Drug A at a lower dose than would be considered clinically therapeutic against New Drug B.


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.

Exactly. I'm curious about how GET is actually practiced at St. Bart's. Do they get Marchand's benign Peter White or the same old Blame-the-victim White?
 

Richie

Senior Member
Messages
129
Seems to me also that this is a crafty re-branding of pacing/energy envelope as CBT/GET.

Interesting that time is devoted to discussing whether CFS is physical or mental (or both).
Are HIV, childbirth, autoimmune conditions etc (all in the book) subjected to the same preliminary questioning as to status? What does mind over matter mean in the case of CFS/ME as presented in the article, anyway?

For the sake of argument:
Grade A mind over matter in medicine might be he application of mental techniques resulting in improvement of physical parameters.which are themselves rooted in biophysical rather than psychological mechanisms. Burns are biophysical. If healing can be sped up by psychological techniques, that is mind over matter..
Grade B might be be the reprogramming of perception to alleviate response to biophysical problems. Psychological techniques of pain control where there is a real lesion e.g. a healing burn would be an example.
Grade C might be psychological relief of a purely central condition e.g. phantom limb pain, where the pain is real but outlasts the damaged limb.

Surely the power of mind over matter in treating CFS/ME would be better demonstrated by first placing ME/CS on a par with HIV, autoimmunity etc and then showing the benefit of mental techniques in an illness whose biophysical status is not subjected to doubt ab initio. Rhetorically, why not take some rituximab responders for example, withdraw the drugs andgive them CBT/GET. If they improve as well as those on the drug, that would be high value mind over matter data. (God forbid that this should be done, of course).
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Instead of an endorsement of ME/CFS as biophysical but alleviable by mind over matter, we are treated to mental-physical doubting and later to Noakes' musings regarding resetting of the so-called "master-controller", which put CFS/ME firmly in the Grade C camp of "no ongoing peripheral physical cause or process" - apart from a little deconditioning, naturally., Is this the scientific reality according to the latest research? . Further Noakes has worked, largely amongst athletes who may not represent the bulk of CFS/ME patients and who may have had athletic overtraining rather than ME/CFS,. It may be that these subjects have (had) a centrally based syndrome which might well be some kind of subconscious conditioned over-response to the particular noxious input which caused their malady - i.e excessive physical exertion, but is this a fair model of the general ME/CFS population? Even if it were, we would be dealing with a psycho-central condition, rather than a physical illness such as lupus, MS, HIV. This is of course the contention of the CBT/GET lobby but if true, puts "mind over matter" in the context of CFS/ME into Grade C, so why mention it alongside HIV, burns etc.?

This is not a demonstraton of mind over matter in the case of CFS. Rather it demonstrates the ongoing determination of White et al to present CFS/ME as a not very material condition in the first place, which requires a not very biophysical treatment - while mentioning us in the same breath as HIV etc. to show how seriously they take us.
 
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worldbackwards

Senior Member
Messages
2,051
Looks like they're using the same patient that they used to promote White's clinic in 2006: http://news.bbc.co.uk/1/hi/health/6120514.stm

I'd have thought that a decade would have allowed them to produce one other pleasing anecdote!
This has been bothering me: the BBC article was from 2006. So, around about the same time that White was making sure that this patient didn't push through her symptoms and make herself worse, he was simultaneously recommending an unadulterated form of GET in the draft NICE guidelines and telling them that they shouldn't let patients have disability aids as it just encourages them in their delusions. And they wonder why we don't think they act in good faith.

Sunday tomorrow, so hopefully they'll be letters.
 

actup

Senior Member
Messages
162
Location
Pacific NW
Simon Wessley and company could not do what they do without significant backing from powerful government and corporate players. I suspect that the opposition we face is much stronger than a group of UK Psychiatrists and psychologists with a biopsychosocial bias.

Is medical care rationing on a large scale the goal? The nature of our illness makes us easy marks and many health care systems have already saved one hell of a chunk of money over a 30 yr period using the Wessley school's sophisticated misinformation and disinformation tactics. I suspect that they were meant to be a model and lead the way for further ME/CFS rationing by other first world countries. This is of course just a conjecture. I'm sure there are many other motives for these sustained,long term, highly organized attacks on the vulnerable ME/CFS population that we'll never know about. I do not think we are dealing with incompetents and imbeciles.
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Rather sad to hear Bill Bryson waffling on so cluelessly.

“It was genuinely tough to get to this shortlist – there were so many good books published this year. I feel the Royal Society prize is an especially important one. It’s the Nobel prize of science writing and we really wanted to be especially careful with getting the best possible list,” said Bryson.

And there's a science fiction writer on the judges' panel, so Jo Marchant's drivel stands a chance :(
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Rather sad to hear Bill Bryson waffling on so cluelessly.

That was my first reaction, too. I love a lot of his stuff, including his History of Everything. But maybe that's because he approaches science at my level — ie. layperson-friendly. Without a particular reason to look deeply into things like PACE, intelligent non-scientists like him are unlikely to be aware of just how much bullshit underlies that whole school of psychiatry. Like you, I wouldn't be surprised if Marchant's book wins, but I guess we have to try to see that as an opportunity.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Listened to the History of Everything over and over. Great stuff. I had never been aware of just how many kinds of creatures could do you in in Australia. He of course plays it up for entertainment otherwise you are almost inspired at the survival rate of the Aussies.

It's sad when people who one admires seem to be hoodwinked by nonsense. But it's not done yet so maybe. . .

Edit for clarity: The Australia comment immediately following ABHoE is a separate book.
But those familiar with Bryson will no doubt know that.
 
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Esther12

Senior Member
Messages
13,774
Still?

I really thought that by now people in the UK science establishment would at least be interested in avoiding embarrassing themselves any further.
 
Messages
1,446
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Guardian 4th of August - Jo Marchants book 'Cure' has been shortlisted for the Royal Society Science book Prize.
If anyone has the energy please take a look at the Comments (on the link) about Jo Marchants book and ME/Pace on this article by Bill Bryson, and Comment if you can (while there is still time, the comments close after a few days).

Nasim Marie Jaffrey, 'arison' and 'Nix77' have commented re ME and Pace (you can 'like' their comments, if you do). What would be useful is some ME science research (with links) and pointing out that Jo Marchants book, being nominated for a science book award, has included a chapter which ignores all the actual science on the subject (ME, 'CFS).

.

‘Bill Bryson hails 'thrilling' Royal Society science book prize shortlist'

'Author of A Short History of Nearly Everything, chairing this year’s judges, says finalists are ‘as interesting useful and accessible as any writing you will find in any genre’

https://www.theguardian.com/books/2...ng-royal-society-science-book-prize-shortlist'

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Messages
1,446
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Most of the UK Amazon Reviews for Jo Marchant's Cure are gushingly positive, full of 5 star reviews. Again, if anyone has the energy to Review the book on Amazon..... The first post on this thread reproduces a couple of long paragraphs and this earlier Guardian article has an extract from the book (all about 'CFS' of course)

https://www.theguardian.com/society...ried-alive-victim-of-chronic-fatigue-syndrome



https://www.amazon.co.uk/Cure-Journey-Into-Science-Mind/dp/0857868624/ref=cm_rdp_product


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A.B.

Senior Member
Messages
3,780
Good reviews because it tells a nice story, one that people want to hear: that they are in control of their health. Alternatively, that their good health is proof they are managing their life well (not unlike certain other unreasonable patients).

I find it concerning that the book apparently promotes the myth of the curative placebo (which implies that people can make themselves sick through nocebo as well). This has been explicitly discredited by a series of large reviews. The book is extremely flawed from a scientific point of view.
 

A.B.

Senior Member
Messages
3,780
You can "look inside" the book on the amazon store. There are chapters with titles such as

Pavlow's Power: training your immune system.
Fight or Flight: thoughts that kill.
Fountain of Youth: the secret power of friends.

Enough said.