Cure: A Journey Into The Science Of Mind Over Body.

IrisRV

Well-Known Member
I think the criticism of the article (vs the book) deserves its own thread. Maybe @Cort could split it off?
It's a bit hard to take her seriously, given the type of thinking she exhibited in the article. Whatever the books says, the article makes it pretty clear how she thinks this kind of stuff should be applied in the real world. :yuck:

It turns out that Jo Marchant did her Phd at Bart's Hospital, the same place Peter White works...small world
That isn't promising.

I don't think this is a person or a treatment plan I'm interested in following.

That isn't to say people shouldn't run with it if it works for them. We're all different, so we can respond differently to different approaches. As long as no one is claiming this kind of thing is a successful treatment for the majority of PWME, I can live with it. If it helps some people, great! We all need every little bit of improvement however we can get it.
 

Remy

Administrator
It's a bit hard to take her seriously, given the type of thinking she exhibited in the article. Whatever the books says, the article makes it pretty clear how she thinks this kind of stuff should be applied in the real world. :yuck:
It's night and day. Hard to believe the same person wrote both...
 

IrisRV

Well-Known Member
It's night and day. Hard to believe the same person wrote both...
Interesting. I wonder how we, as patients, are supposed to interpret that.

My personal reaction is to go with how she actually applies her hypothesis, rather than the hypothesis alone. It's how it's applied in real life situations that matters to me as a patient.

In addition to learning the author's perception of the concepts involved, a reader can gain insights and see different personal applications of the information in the book. They may not be what the author had in mind, but that's the way books work -- the reader brings his own experience to the reading and can see other facets to the information.

If people are finding ways to use the information in Marchant's book, whether or not they are what Marchant intended, more power to them. Use the tools that work for you, I say.
 

Seanko

Well-Known Member
UK Charity Action for ME (AfME) have made a response to the Observer article & the book.

AfME response to Cure

[article=https://www.actionforme.org.uk/news/the-observer-and-the-mighty-examine-me/]“This article does an excellent job of highlighting the terrible impact of M.E. on Samantha’s life, and the person-centred approach to symptom management she experienced at the clinic she attended. However, while Marchant tells Samantha Miller’s story of recovery with compassion and kindness, there are around 250,000 people in the UK affected by M.E., and everyone’s experience is different.

“Moreover, the way the article represents research into CBT and GET is at best inaccurate. 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. Evidence from published research and patient surveys clearly demonstrates that these management approaches do not benefit everyone with M.E. The PACE trial showed only modest improvement for the small number of patients that it helped, and there is considerable scientific debate around the way the trial was conducted, in which the researchers themselves continue to engage.

“It’s essential to note that no research has been undertaken into symptom-management approaches that help people who are severely affected – that is, house- and/or bed-bound – by M.E. For this vulnerable and neglected patient group, nothing has been proven to be effective.”[/article]
 

IrisRV

Well-Known Member
@Remy, please tell us more about how this book/theory has helped you. For our fellow patients to able to assess whether this might be useful to them, they need as full a picture as possible. The more information, the better -- sources of information, pros, cons, concerns, and experiences.

I have expressed my concerns and why this treatment is not for me. I think we need more information about why other people find this is good for them if we want to give a complete picture. We are all different -- not just in our symptoms, but in how we think and what we value.

I am more in the immune/viral subset. I do not have significant overactive parasympathetic system symptoms. As a scientific thinker, I prefer the biophysical hypotheses of medical researchers over the mind/body or straight up psychological hypotheses of psychologists. I tend to look at the body of work related to a hypothesis rather than see what I can glean from a single work in isolation. This combination makes it unlikely that this therapy is going to help me or those like me.

The way I think, the type of information I prefer, and how I approch it is my way. It's not the only way or the best way. It's just mine. We need more viewpoints from different perspectives here -- not just yours, but those of other people coming from different positions. That will give the best picture for people who want to decide whether this treatment is worth looking into. If they're more like me, they'll probably decide it's not. If they're more like some other patient(s) they might decide it is.

Knowledge is power.
 

Remy

Administrator
I do not have significant overactive parasympathetic system symptoms.
Right. So then ANY approach to turn down overactive sympathetic responses (AKA fight or flight response) probably wouldn't interest you all that much. You probably won't be all that interested in the thread on beta blockers either then (because that's a medicine that purports to do much the same thing). And that's totally fine. :)

I don't believe the body is a machine...where inputs and outputs equal something discrete, measurable and unchanging like the skeptics who proclaim evidence based medicine is the only way forward when in fact it hasn't added much of anything beneficial to treatment. Unless you are an insurance company that can now deny coverage for treatment based on Science. I think the work on metabolism has shown that very clearly in debunking the calories in/calories out myth. It's the same thing here. I think the brain adds something (often) ineffable to any treatment and I want to make that work *for* me any way that I can.

There's lots of actual, scientific research on the effects of meditation and other mind/body practices and research into the measurable ways that they change the brain. This book just reports on some of the latest research into the mind/body connection. And then goes a step further into some of the theories scientists are contemplating as future avenues for more research.

That's all this is to me...another way to address symptoms caused by my disease. It's not the cause or the cure.
 

Remy

Administrator
It turns out that Jo Marchant did her Phd at Bart's Hospital, the same place Peter White works...small world
I don't know that I think that means anything, really.

I can name quite a few shit-for-brains people I had the pleasure of working with over the years. Working with someone gives you the opportunity to know *both* the good and the bad quite intimately. It doesn't automatically make you their fan or their disciple. In fact, sometimes quite the opposite.

So it's hard to say one way or another if or how she was influenced by PW.
 

IrisRV

Well-Known Member
And that's totally fine. :)
:)
Working with someone gives you the opportunity to know *both* the good and the bad quite intimately. It doesn't automatically make you their fan or their disciple. In fact, sometimes quite the opposite.
True, but the university students/professors relationship is quite a bit different from working together in other situations. In this case the students' perception of the topic is deliberately colored by that of the professors in their field at that school. The students are being taught, after all.

If a researcher's later work takes a distinctly different approach or viewpoint from her university, then one can assume she has left that mindset. If, however, their later work is in the direction of the viewpoint of her university, then it's safe to assume she believes her university's viewpoint, or is staying with her university's party line.

If Marchant had taken a stand against BPS thinking, I would say where she studied wouldn't matter. But since she's demonstrating the same general viewpoint, I think where she studied is relevant.

Putting the discussion of Marchant's view of ME to one side for the moment, important information we need here is how this hypothesis/treatment is working for patients in the real world. I don't just mean how well, but also how it is affecting symptoms, and by what mechanism. The proof of the pudding is in the eating after all.
 

Remy

Administrator
True, but the university students/professors relationship is quite a bit different from working together in other situations. In this case the students' perception of the topic is deliberately colored by that of the professors in their field at that school. The students are being taught, after all.
As someone who was in academia until my 30s, I wouldn't really say it's all that different. It's still pretty easy to tell if someone's world view doesn't align with your own. You just aren't as free to express it.

Do we even know that she studied under PW for sure? Or just that they were in the same place at the same time?
 

Empty

Well-Known Member
That certainly is unfortunate. And really not fair at all to her book to tie it in with such terrible research.

That's not at all what she's saying...that it's in our heads. It's about *using* our heads, though, to help mitigate symptoms and that is totally different than saying we've caused our own illness or can think our way out of it if we just try hard enough.
Can you sum up what the book 'Cure' asks us to do then with our heads?
 

Remy

Administrator
Can you sum up what the book 'Cure' asks us to do then with our heads?
I wouldn't say that it asks us to do anything really other than look at some of the more recent science regarding how the mind and body interact.

An example I found particularly relevant...Tim Noakes is a sports physiologist at University of Cape Town in S Africa. He did studies that found that athletes were dying due to over-hydration during marathons. His work was rejected in the US though, due to the billion dollar a year sports drink market until 13% of the participants in the 2002 Boston Marathon suffered water intoxication.

So he's studying muscles and how they behave when they approach exhaustion. He says that the dogma around this is that athletes get tired when "their bodies hit physical limits - their muscles run out of oxygen or fuel, or become damaged by the accumulation of toxic by-products such as lactic acid. This in turn triggers pain and fatigue, forcing us to stop exercising until we recover."

More quoting from the book:
"This basic theory had never been questioned since it was proposed by Nobel Prize wining physiologist Archibald Hill in 1923. Yet when Noakes tried to test it, his results didn't make sense. First, Hill's theory predicted that if athletes exercise to their limit, then shortly before they stop with exhaustion, oxygen use should level off, because the heart can't pump fast enough to get any more oxygen to the tissues that need it. But just as with the experiments at high altitude, that didn't happen...

Meanwhile other studies have shown that although levels of fuel inside muscles (glycogen, fat, ATP) diminish with exercise, they never run out. Noakes also studied muscle use, by asking cyclists to ride exercise bikes with wires attached to their legs. Hill's theory says that athletes should recruit all available resources as they tire, engaging more and more muscle fibers until, with nothing more to give, they finally hit the breaking point. But Noakes found the reverse. As the cyclists neared exhaustion, muscle fibers were being switched off. At the point at which his volunteers said they felt too fatigued to continue, they were never activating more than about 50% of their available muscle fibers. Exhaustion forced them to stop exercising, yet they had a large reserve of muscle just waiting to be used.

All of this convinced Noakes that the old idea - of fatigue being caused by muscles pushed to the limit - couldn't be true. Instead, he and his colleague, Alan St Clair Gibson, proposed that the feeling of fatigue is imposed centrally, by the brain."

Well, I don't know about you, but that sure as heck seems relevant to the hypothesis that MECFS is a *brain* problem at the heart of it to me.
 

Who Me?

Well-Known Member
Maybe this is why I get fatigued just be concentrating. Equal if not worse to the fatigue I get when i do something physical.
 

weyland

Well-Known Member
Well, I don't know about you, but that sure as heck seems relevant to the hypothesis that MECFS is a *brain* problem at the heart of it to me.
How do you interpret Julia Newton's work then, where muscle cells from ME patients grown and exercised in a petri dish retain abnormalities, far away from the influence of the patient's brain?
 

Remy

Administrator
How do you interpret Julia Newton's work then, where muscle cells from ME patients grown and exercised in a petri dish retain abnormalities, far away from the influence of the patient's brain?
My understanding is that she says herself that it's likely an autonomic (ie brain) problem causing the abnormalities...but I am not an expert on her work.
 

weyland

Well-Known Member
My understanding is that she says herself that it's likely an autonomic (ie brain) problem causing the abnormalities
Not sure what the ANS has to do with voluntary control of skeletal muscle, but I must not understand what she's found very well then.
 

Remy

Administrator
Not sure what the ANS has to do with voluntary control of skeletal muscle, but I must not understand what she's found very well then.
I am 100% that I don't understand her work very well, but this is what I found:

We know that the autonomic nervous system controls some of the transporters that are on the cell surfaces of muscle cells. So it may be that these transporters are not working as efficiently to remove acid from the cells as they really ought. Or it may equally be that the blood flow run off from the muscles as they exercise, which we know is modulated by the autonomic nervous system, perhaps again is meaning that the acid is not washed away from the muscles as they exercise. It’s difficult to know why the transmitters don’t work properly. It may be that there’s some process that damages these transmitters or it may be that there’s some problem in the metabolic chain that leads up to the development of acid within the cells. Our experiments performed with the muscle cells in the lab, suggest that there may be deficiencies of certain proteins or kinases within the metabolic pathway which could potentially be modulated by medication.
 

weyland

Well-Known Member
Ah, yeah. The autonomic link certainly makes sense in that context. I'm not sure that hypothesis or the transporter hypothesis makes much sense in light of the other research that shows early and elevated lactate in the blood of patients during exercise though. The last sentence is what makes the most sense to me.
 

Seanko

Well-Known Member
@weyland & @Remy
The Julia Newton transcript is from her video for the Dutch ME/CFS society

Transcript from video


The autonomic nervous system (ANS) is part of the peripheral nervous system, so it can respond to changes in muscles & organs. Quote below from Wikipedia.

[article=https://en.wikipedia.org/wiki/Autonomic_nervous_system]The autonomic nervous system is a control system that acts largely unconsciously and regulates bodily functions such as the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. [/article]
 
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Seanko

Well-Known Member
The idea that the muscle & autonomic nervous system dysfunction could be treated is encouraging.

Prof Newton comments on the possible causes are worth reading.

[article=http://www.meresearch.org.uk/news/newton-talks-muscle/]So in patients with ME we know that about nearly 90% of patients will describe symptoms of autonomic dysfunction. And when we perform tests, objective tests looking at how the autonomic nervous system works, we’ll find lots of abnormalities in the autonomic nervous system when we objectively test. We’re not sure yet why these abnormalities are so common in people with ME. Our current experiments are looking at individuals, about 80 patients with ME, seeing whether or not we can begin to understand where the abnormalities lie.

We wonder whether it might be problems of the brain centres that control the autonomic nervous system, so they are areas in the brain stem, whether or not it might be an abnormality of the hypothalamic pituitary axis, so how hormones are produced and the impact that they might have on the vascular system. Or alternatively it could be that the autonomic nervous system is having difficulties regulating the cardiovascular system and that the symptoms of autonomic dysfunction arise as a consequence of that.[/article]
 
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