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

Remy

Administrator
While I'm waiting for Science to figure out the root cause of MECFS, I figure I will do everything I can do to try to make my symptoms better. Since some of my most disabling symptoms seem to come from an overactive sympathetic nervous sytem (or an underactive parasympathetic arm), I've been interested in things like meditation and neurofeedback. These are well documented to be able to reduce symptoms and it makes me feel better to try. I also am interested in PTSD research because I see many overlaps between it and my condition.

This book, Cure, by Jo Marchant is very interesting. She's an engaging writer. There was an interview on Fresh Air the other day as well and the link includes an excerpt for anyone who is interested.

http://www.npr.org/books/titles/464379778/cure-a-journey-into-the-science-of-mind-over-body

Another article in this vein was recently in The Atlantic. This study is very interesting about how we develop conditioned responses and ways to harness that to our advantage for a change.

http://www.theatlantic.com/health/archive/2016/02/conditioned-immune-responses/461985/
 
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Seanko

Well-Known Member
@Remy There is an extract from her book in the Observer newspaper today.
Unfortunately it is a homage to Peter White & PACE/CBT/GET. I have let the 2 biggest UK charities know about it and spoken to the head of one.

The article is yet to be published online, expect a wave of protest when it is.
 

Remy

Administrator
Unfortunately it is a homage to Peter White & PACE/CBT/GET.
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.
 

Who Me?

Well-Known Member
@Veet is also interested in sympathetic and parasympathetic stuff. I think mine are messed up too @Remy. It'd be great to get some control over that.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Oh man there is some fascinating stuff out. I dearly wish I could get control of my sympathetic nervous system. I think I would be in good shape if I could. It is not easy!

Check out this article. It's really long one

http://www.gizmodo.co.uk/2016/02/you-can-train-your-body-into-thinking-its-had-medicine/

They basically trained the body to think it was getting a drug. It didn't get the drug - but it responded as if it did...

Marette Flies was 11 when her immune system turned against her. A cheerful student from Minneapolis, Minnesota, she had curly brown hair and a pale, moon-shaped face, and she loved playing trumpet in her high-school band. But in 1983, she was diagnosed with lupus, a condition in which the immune system destroys the body’s healthy tissues.

It ran rampant, attacking her body on multiple fronts. She was given steroids to suppress her immune system; the drugs made her face swell up, and her hair fell out onto her pillow and into her food. But despite the treatment her condition worsened over the next two years, with inflamed kidneys, seizures and high blood pressure. She suffered frequent headaches and her whole body was in pain.

By 1985, antibodies were attacking a vital clotting factor in Marette’s blood, causing her to bleed uncontrollably. It got so bad that her doctors considered giving her a hysterectomy, because they were worried that when her periods started she might bleed to death. She took drugs including barbiturates, antihypertensives, diuretics and steroids but her blood pressure kept rising. Then her heart started to fail, and her doctors reluctantly decided give her Cytoxan, an extremely toxic drug.
Cytoxan is very good at suppressing the immune system. But it causes vomiting, stomach aches, bruising, bleeding, and kidney and liver damage, as well as increased risk of infections and cancer, and at the time its use in humans was experimental. Karen Olness, a psychologist and paediatrician now at Case Western Reserve University in Ohio, was helping Marette to cope with the stress and pain of her condition, and she was concerned that if lupus didn’t kill the teenager, this new drug might. Then Marette’s mother showed Olness a scientific paper she had seen. It claimed to have slowed lupus in mice—but with just half the usual dose of Cytoxan.

................................

They conditioned her body to respond a certain way by associating a drug she took with a certain taste. After awhile they removed the drug and kept exposing her to the taste - and her system kept responding. It had learned what to do when given that drug and it did it on its own!

The pair worked fast to design a conditioning regime for Marette. The first question was what taste to use. “We had to choose something that was unique, that she hadn’t experienced before,” says Olness. She considered vinegars, horehound, eucalyptus chips and various liqueurs before finally settling on a combination of rose perfume and cod liver oil.

The hospital’s ethics board approved the trial in an emergency meeting and Marette’s treatment started the next morning. She sipped the cod liver oil as Cytoxan flowed through an intravenous line into a vein in her right foot. Meanwhile Olness uncapped the rose perfume and waved it around the room.

They repeated this bizarre ritual once a month for the next three months. After that, Marette was exposed to cod liver oil and perfume every month, but received Cytoxan only every third month. By the end of the year, she had received just six doses of the drug instead of the usual twelve.

Marette responded just as her doctors would have hoped from the full drug amount. The clotting factor that her antibodies had been destroying reappeared, and her blood pressure returned to normal. After 15 months she stopped the cod liver oil and rose perfume but continued to imagine a rose, which she believed helped to calm her immune system. She graduated from high school and went to college, where she drove a sports car and played trumpet in the college band.
Importantly, they note that this process works very well in some people and not in others. Those miracle LP cures we've heard about probably just reflect that portion of the population which this kind of thing works for. It all appears to be mediated by the sympathetic nervous sytem

So far, he has discovered that the effect is mediated by the sympathetic nervous system, which drives our response to stress and is part of the network that Felten discovered linking the brain and immune system.
 

Veet

Well-Known Member
Great topic. I think I'll make my sympathetic nervous system my focus this year. It's possibly better than it's ever been, but over-stimulation is never far away.

There's now a headset that essentially measures EEG available for about $100, with many different apps. I haven't yet closely examined the apps (discovered that Firefox wasn't loading the page correctly), but there's a meditation journal, and maybe some others that would be appropriate,

http://neurogadget.com/2012/12/20/neurosky-mindwave-mobile-review/6611
http://store.neurosky.com/pages/mindwave
http://www.amazon.com/NeuroSky-80013-001-MindWave-Headset/dp/B00A2UQUXY/ref=sr_1_6?m=A26NM1OSTNWVCB&s=merchant-items&ie=UTF8&qid=1443719947&sr=1-6
 

Veet

Well-Known Member
I think this is a bit different. More like focussing on graphics to help you learn to get into the zone. Or at least that's what I'm looking for.
 

Who Me?

Well-Known Member
I think this is a bit different. More like focussing on graphics to help you learn to get into the zone. Or at least that's what I'm looking for.
I'll try to read it when my brain is working. I'll be curious to hear how you do with this.
 

Seanko

Well-Known Member
Jo Marchant's article in the British Sunday newspaper the Observer is now available online.

Jo Marchant on ME/CFS in Observer

Samantha Miller made a deal with her partner and her sister. She had been referred to a specialist named Peter White at St Bartholomew’s Hospital in London. Please, just give him six months, they said. If you’re still no better after that, we’ll help you to end your life.

White was developing similar ideas about chronic fatigue. He doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the brain to reduce massively what it considers a safe level of exertion. To try to reverse the change, he developed with colleagues an approach called graded exercise therapy (GET), which is intended to work like an ultra-gentle form of interval training.

The idea is to set a baseline of activity that the patient can maintain safely, then gradually increase it. Each step has to be small, so as not to risk a relapse. Patients report feeling vastly more fatigued than healthy people for a set level of exercise. But White has shown that, after a course of GET, they feel less tired after the same amount of exercise, even though their physical fitness is unchanged. Just as when athletes do repeated sprints, the exercise regime slowly retrains the patients’ brains that each successive activity level is safe.

White also uses cognitive behavioural therapy (CBT), in which therapists work with patients to challenge negative ideas and beliefs that they have about their illness. This is based on the finding that, as long as patients are terrified that any exertion will cause a crash, the fatigue will maintain its grip. CBT encourages them to try out other ways of coping, and to test whether small amounts of activity are all right. The hope is that this will reduce their fear, helping them to realise that perhaps some exertion is safe after all and that they have the chance to recover.

White suggested that Miller try a combination of GET and CBT. “Will I get better?” Miller asked her therapist. “Of course you will,” she replied, and for the first time Miller believed that it might be true.
Her first exercise goal was simply to turn over in bed once an hour. Every few days, she increased her activity slightly until she was able to sit up for five minutes at a time. Later, when she was out of bed, she might try cooking a meal, but the task would be split into parts. Go downstairs. Chop the onions. Go back upstairs and lie down.

As a creative person, she found the total lack of spontaneity hard to accept. But the perfectionism that she feels contributed to her condition helped her.

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.”

It took five years of grim determination, but she finally clawed her way out of the fatigue and back into a normal life.

Several small clinical trials suggested that Miller wasn’t alone. The results showed that CBT and GET were helpful treatments. But instead of welcoming the findings, patient groups hated them. “That was received like a lead balloon by almost all the patient charities in the UK and abroad,” says White. These groups were very sceptical that a “psychological” treatment like CBT might help patients with CFS and believed that the activity goals of graded exercise therapy were downright dangerous. CFS is a purely physical condition with no known cure, they argued, so anyone helped by either of White’s therapies clearly didn’t have it.

Instead, patient groups advocated an approach called pacing. This helps patients adapt to life within the physical limits set by the condition and encourages them not to do anything that pushes them close to exhaustion. This would make perfect sense if chronic fatigue were incurable. But, according to White’s theories, it could be counter-productive, by reinforcing negative beliefs and acting to maintain the condition rather than allowing patients to recover.
 
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Seanko

Well-Known Member
The researchers published their results in the Lancet medical journal in 2011. They found that APT was ineffective; patients in this group did no better than the controls. But GET and CBT were both moderately helpful, reducing fatigue and disability scores significantly more than in the other two groups. What’s more, 22% of patients recovered after a year in the CBT and GET groups, compared with only 7–8% in the other two groups. 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.

If the previous trials had gone down badly, this one was received with absolute fury. The Lancet was deluged by letters criticising White’s methods. Action for ME rejected the findings. One professor called the trial “unethical and unscientific” in a 43-page complaint to the journal, while patients used Facebook to ask: “When is the Lancet going to retract this fraudulent study?”

Instead, the journal published an editorial in support of White and his colleagues, saying that they “should be praised for their willingness to test competing ideas and interventions in a randomised trial”. But it didn’t change the attitude of the patient groups. After working for years to fund, organise and run a definitive trial, White finally had the data that he believed could help other chronic fatigue patients like Miller. Patients attending his clinics welcomed the findings, but he could not persuade ME patient organisations to listen.

The debate over whether chronic fatigue syndrome is biological or psychological still runs hot. In June 2014, two academics from the Essex CFS/ME service at Southend University Hospital posted an article on the website of the British Medical Journal, speculating that chronic fatigue might be a “meme”. This term was invented by the geneticist Richard Dawkins in his book The Selfish Gene (1976) to describe a psychological idea or behaviour that is transmitted from person to person.

The authors of the article argued that several medical conditions through history might be due to memes, such as “railway brain”, a combination of fatigue and psychiatric symptoms that affected travellers on trains in the mid-19th century and was thought to be due to invisible brain damage caused by the jolty ride. Perhaps, they said, some aspects of chronic fatigue are spread in a meme-like fashion too.
 

Seanko

Well-Known Member
According to White, the problem comes from a mindset that pervades medicine, in which illnesses are seen as either biological or psychological. “The vast majority of doctors have this dualistic understanding of mind and body,” he says. “Go and see a psychiatrist for the mind and a physician for the body.” It’s a distinction that leaves chronic fatigue patients with only two options: their condition is either biological, currently incurable and impermeable to psychological factors; or they’re hypochondriacs who have invented the whole thing. No wonder they are on the defensive.

In fact, argues White, it’s a false divide. The mind and body inevitably interact and reflect each other: “What is psychological is physical and what is physical has a psychological perception to it,” he says. Scientists are increasingly finding that psychiatric disorders such as schizophrenia or depression reflect structural abnormalities in the brain, while neurological problems such as Parkinson’s cause psychological symptoms as well as physical ones.

White points out that, although CBT is often thought of as a psychological therapy, it has physical effects on the body. Several studies have shown that a course of CBT triggers a measurable increase in brain matter, for example, or that it can influence the levels of stress hormones such as cortisol.
 

Remy

Administrator
That's an unfortunate article to be sure.

It's especially unfortunate because now people will just disregard strategies that could have been genuinely helpful because it's tied into something that wasn't.
 

weyland

Well-Known Member
The authors of the article argued that several medical conditions through history might be due to memes, such as “railway brain”, a combination of fatigue and psychiatric symptoms that affected travellers on trains in the mid-19th century and was thought to be due to invisible brain damage caused by the jolty ride. Perhaps, they said, some aspects of chronic fatigue are spread in a meme-like fashion too.
This kind of idea is so absurd and only works if you assume that fatigue is the only symptom of the disease. Most people have never heard of ME or have no in depth idea about all of the symptoms that it entails. How could one psychosomatize all these complex neurological symptoms out of thin air having no previous knowledge of their existence? This is the same boring Edward Shorter/Elaine Showalter shit recycled again and again. It only works if you ignore the objective signs and symptoms and take the name CFS at face value.
 

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