Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

[dave30th]

That's a shame given the thousands of people reporting the brain retraining has helped them improve or recover from M.E.

Unfortunately all the studies that have purported to document such benefits are so fraught with issues that they show nothing--such as Professor Crawley's fraudulent pediatric study, which includes such egregious methodological lapses that it should never have seen the light of day and should have been retracted rather than being slapped with a 3,000-word correction. Thousands of people have probably also claimed miracle cures from going to Lourdes. That doesn't mean we automatically endow these reports with scientific credibility.

I'm curious if you've achieved recovery from the LP or similar programs?

 

[Utsikt]

That's a shame given the thousands of people reporting the brain retraining has helped them improve or recover from M.E.

Thousands of people report acupuncture helps them or that they feel better by cleansing their aura.

To my mind, it means it very much is the top priority.

So by your logic, acupuncture should also be a top priority?

 

[Hutan]

A member mentioned to me this morning a point that is important to remember, that makes personal anecdotes in favour of brain retraining and LP even less reliable than personal anecdotes in favour of acupuncture and homeopathy.

That is, the brain training interventions train people to change the way they think about their symptoms and how they report them to themselves and others. Therefore, reporting no improvement can be taken to be a failure of effort and of following the instructions, and so an indication that the person did not want to get well enough.

 

[Utsikt]

A member mentioned to me this morning a point that is important to remember, that makes personal anecdotes in favour of brain retraining and LP even less reliable than personal anecdotes in favour of acupuncture and homeopathy.

That is, the brain training interventions train people to change the way they think about their symptoms and how they report them to themselves and others. Therefore, reporting no improvement can be taken to be a failure of effort and of following the instructions, and so an indication that the person did not want to get well enough.

I had not thought of that before! Very good observation by whomever.

 

[jnmaciuch]

A member mentioned to me this morning a point that is important to remember, that makes personal anecdotes in favour of brain retraining and LP even less reliable than personal anecdotes in favour of acupuncture and homeopathy.

That is, the brain training interventions train people to change the way they think about their symptoms and how they report them to themselves and others. Therefore, reporting no improvement can be taken to be a failure of effort and of following the instructions, and so an indication that the person did not want to get well enough.

Good point! If I remember correctly, it was a point that was brought up in Wilshire et al. as well. Coupled with the priming that the treatments were already proven effective (and only fail if someone "gives in" to their symptoms.)

Side note...I don't think there's any way to evaluate it systematically, but I can't help but wonder how many participants literally view the post-intervention questionnaires as a "test."

If the statements on the questionnaire are similar to the exact statements that were listed as unhelpful thought patterns in my CBT manual, I might get the wrong impression of what this questionnaire is meant to evaluate (the intervention or me?).

 

[dave30th]

Therefore, reporting no improvement can be taken to be a failure of effort and of following the instructions, and so an indication that the person did not want to get well enough.

This is an important point to remember, especially about LP. Any acknowledgement of still "doing" the illness or that you still have pains is essentially automatically failing the LP or failing to do it right. So yes, it trains people to respond differently on questionnaires and to reject anything that would indicate they're still sick or suffering. (I haven't heard of the other mind-body programs emphasizing this as much--it seems to be more LP-specific.)

 

[Jonathan Edwards]

It intrigues me that we have had at least two quite long threads on this Brain training thing and as yet have heard absolutely nothing about what it actually is or how it works. For all we know you have to stand on your iPhone and tell your limbic system to Stop! Since most people don't have the number for their limbic system on their Contacts list I am not quite sure how it would work but who knows?

 

[Utsikt]

If the statements on the questionnaire are similar to the exact statements that were listed as unhelpful thought patterns in my CBT manual, I might get the wrong impression of what this questionnaire is meant to evaluate (the intervention or me?).

We already know that people are inclined to answer what they believe the observer wants them to answer, but this is a whole new category of bias. Keen observation!

For all we know you have to stand on your iPhone and tell your limbic system to Stop!

 

[dave30th]

Since most people don't have the number for their limbic system on their Contacts list I am not quite sure how it would work but who knows?

They need to contact the National Security Advisor to the U.S. president and ask him to add them to the Contacts list so they will be able to get on any calls.

 

[rvallee]

It intrigues me that we have had at least two quite long threads on this Brain training thing and as yet have heard absolutely nothing about what it actually is or how it works. For all we know you have to stand on your iPhone and tell your limbic system to Stop! Since most people don't have the number for their limbic system on their Contacts list I am not quite sure how it would work but who knows?

I don't really know studying it even means, even aside from it being so vague and generic that it can't really be defined. It has been 'studied' for decades, and all it consists of is bad questionnaires and doing the same identical trials over and over again. This is not research, has nothing to do with science, other than that it keeps some people busy who have been trained scientifically, and uses resources that are supposed to be used for scientific purposes. Which is not the same thing. Everything that could be imagined has already not only been done 10x over, it's already been used commonly as standard practice in many places. We already live in a world in which it has been fully explored. Oh, I guess this is why they use the term 'exploring', instead of researching. Makes sense.

And I can't expect this to change. A thousand years from, if science and technology mostly stagnated and humanity was stuck at the same level of development, 'studying' this would still consist of the exact same things, the same pilot studies showing 'promise' or whatever. I have never even seen a valid proposition for how to study this. I'm confident this could go on a million years without ever being stopped.

Fortunately science and technology keep progressing so this won't happen, but I'm fully confident they could go on for that long.

 

[hibiscuswahine]

It intrigues me that we have had at least two quite long threads on this Brain training thing and as yet have heard absolutely nothing about what it actually is or how it works. For all we know you have to stand on your iPhone and tell your limbic system to Stop! Since most people don't have the number for their limbic system on their Contacts list I am not quite sure how it would work but who knows?

I agree. I would call it an "alternative" psychosomatic therapy. Many have been thought up and applied to ME and come with enthusiastic promoters. They have ditched the psychodynamic part of psychosomatic theory or maybe it is still there hiding in the primitive structures of the brain? - according to the person promoting brain training. Still haven't seen any proof which seems unimportant to people who just want to "help people with ME" and the "therapy" has a very big Facebook following. They make claims it could be life saving and people are attributing their illness to the wrong reason and basically have started to gaslight people.

It appears the "therapy" starts with psycho-education on "neuroscience" but without any provable evidence of any kind (and when this lack of evidence has been repeated over and over again on the brain training thread). It is also does not have any good evidential base in the psychological sciences. Somatic tracking is an alternative health technique.

One of the posters mentioned they go through a long process that might be mindfulness-type practices or getting into a state of deep relaxation whereby you do body scanning (something the BPS school would frown upon as focussing on your symptoms perpetuates health anxiety as per the CBT manual for this theory of ME). Whilst in this state, you "prove' you can cause symptoms from your mind by thinking it and then observing them manifesting in your body. This shows the "power" of the mind. One must try very hard to make symptoms happen and I guess if you can't, one must try some more and if you still can't - you are not doing the technique properly. It is totally unclear what physical symptom you should be manifesting with ME - fatigue? pain? a neurological symptom? a cognitive symptom?

Then you must say to yourself that you are safe. Because the immense power of your mind will soothe the limbic system over time and you will no longer have symptoms. You must keep using the technique for the rest of your life presumably so it is "hardwired' into your brain. Facebook groups perpetuate the myth of this "therapy". And part of the rules of the group is you have to think positively and keep going, sort of health coaching in a group setting. And spread the word of this "treatment".

Some of this sounds like the somatic techniques used for some people with PTSD. I have experience in assessing people with PTSD and Complex PTSD, but Somatic Therapy was not part of the treatment of PTSD when I was practising in the public health system in NZ a decade ago. Somatic Experiencing is another "alternative" psychological "treatment" for "trauma".

There is no evidence that ME is caused by psychological trauma.

There is no evidence that ME is due to "stress".

I have read on other forums that mindfulness is taught to some pwME at ME/CFS clinics in the UK. I do not know how effective they were in altering the course of ME. I see mindfulness purely as stress management tool, not a treatment for ME. As a retired psychiatrist with ME, (who has trained in mindfulness, and taught it to mental health clients as one of many skills that may be useful in managing some mental health disorders), I have not heard of a mainstream psychological therapy that advises their clients to say they are safe, in their mind, and this "retrains" their limbic system to stop symptoms. It reminds me of hypnotic suggestion, another non-mainstream psychological technique with no good evidence base for it.

 

[Kitty]

There is no evidence that ME is caused by psychological trauma.

There is no evidence that ME is due to "stress".

Yep. And no evidence there's any problem with the limbic system for that matter.

You can just imagine the response if they tried to make these claims for fatiguing conditions such as Parkinson's or MS or lupus. I don't know why we're considered fair game for their magical thinking, but hopefully they're starting to realise we're not that easy to take advantage of.

 

[SNT Gatchaman]

Then you must say to yourself that you are safe. Because the immense power of your mind will soothe the limbic system over time and you will no longer have symptoms. You must keep using the technique for the rest of your life presumably so it is "hardwired' into your brain.

Which makes no sense. Either brain retraining and neuroplasticity works, the networks have been modified with new connections formed, and are now hard wired or it doesn't and they aren't. However they can't claim that you have retrained your brain networks, but that you also have to keep retraining them for some unspecified (perpetual?) time. If so, what makes them vulnerable to detraining? Abnormal thoughts/brain circuits? Some pathophysiological input?

 

[jnmaciuch]

Which makes no sense. Either brain retraining and neuroplasticity works, the networks have been modified with new connections formed, and are now hard wired or it doesn't and they aren't. However they can't claim that you have retrained your brain networks, but that you also have to keep retraining them for some unspecified (perpetual?) time. If so, what makes them vulnerable to detraining? Abnormal thoughts/brain circuits? Some pathophysiological input?

It’s quite baffling to me that brain retraining doesn’t actually encourage introspection into past experiences like traditional talk therapy. It was surprising to realize that my experience was such a departure from theirs—I think I just happened to find a regular talk therapist who had read some of those books and was incorporating some of it into his practice.

If your primitive hind brain feels unsafe and that’s somehow causing symptoms, presumably you’d look for why that is.

That would then make it similar to strategies for something like anxiety disorders where there’s a clear connection to childhood family dynamics (in some patients at least). In my own experience, once I figured that out with panic disorder, I wasn’t having panic attacks any more.

But somehow with these brain retraining programs, you never go that deep. Interestingly, I’ve had friends who did CBT or other “cognitive restructuring” therapies for severe anxiety and they describe something very similar—momentary recovery that continually “relapses” until they did traditional talk therapy.

Not saying that all the brain retraining evangelists have some sort of anxiety disorder instead of ME/CFS—I know better than to speculate about the mental health of people I don’t even know (side eye). It just never made sense to me why an ideology so focused on Addressing Fear seems so uninterested in potential root causes when they’re already in pseudotherapy land.

 

[oldtimer]

It’s quite baffling to me that brain retraining doesn’t actually encourage introspection into past experiences like traditional talk therapy. It was surprising to realize that my experience was such a departure from theirs—I think I just happened to find a regular talk therapist who had read some of those books and was incorporating some of it into his practice.

If your primitive hind brain feels unsafe and that’s somehow causing symptoms, presumably you’d look for why that is.

This! I've thought this forever but assumed I must be missing something about the brain retraining type stuff.

 

[Sean]

Brain retraining therapies:

1. Fail to use robust methodology to adequately control the variables. Primarily by relying on subject self-report outcome measures alone, to the point of dismissing objective measures as being irrelevant, misleading even. Along with selective use of evidence, and some slick sophistry to dress it all up.

2. Place patients in a highly adverse double-bind. Not only are they are not allowed to report ('do') symptoms, they actually get punished for reporting any, and blamed for any failure. Thus rendering the therapy both unfalsifiable and cruel, and its practitioners beyond accountability.

 

[oldtimer]

Brain retraining therapies:

2. Place patients in a highly adverse double-bind. Not only are they are not allowed to report ('do') symptoms, they actually get punished for reporting any, and blamed for any failure. Thus rendering the therapy both unfalsifiable and cruel, and its practitioners beyond accountability.

I know this is true of the LP but does this apply to other types of brain training too? It's so secretive that I haven't read how these courses are conducted. Not that I've tried very hard. And those that have tried to promote it on this forum certainly aren't telling.

I have a friend who was having to run to the toilet dozens of times a day with urinary urgency. Her GP sent her for some sort of therapy to retrain her brain. She was supposed to tell herself that the urgency was her brain playing tricks on her and to gradually extend the time between toilet dashes to reprogram her brain. She was also told to distract herself until the urge subsided, which it didn't. It didn't work.

 

[hibiscuswahine]

I know this is true of the LP but does this apply to other types of brain training too? It's so secretive that I haven't read how these courses are conducted. Not that I've tried very hard. And those that have tried to promote it on this forum certainly aren't telling.

I have a friend who was having to run to the toilet dozens of times a day with urinary urgency. Her GP sent her for some sort of therapy to retrain her brain. She was supposed to tell herself that the urgency was her brain playing tricks on her and to gradually extend the time between toilet dashes to reprogram her brain. She was also told to distract herself until the urge subsided, which it didn't. It didn't work.

I think the GP is using this term of brain training very loosely and not like our new forum members seem to be describing. I have interstitial cystitis (the so-called irritable bladder) and saw a hospital urologist, this is more learning to tolerate the bladder pain and allow the bladder to fill further before emptying it. Yes distraction may help but ultimately it didn't work for me either. (Then he offered me a very expensive medication that I could not afford to take for the rest of my life and was not funded in our public health system. Some sort of anti-spasmodic).

So basically it is like learning to tolerate a painful sensation with the hope that the body will reset itself. Distracting oneself is much like the distracting yourself if addicted to nicotine - to wait for the urge to subside.

If you ask google AI to explain somatic tracking it gives you this summary of the practice: Maybe their brain training is different?

Somatic tracking is a technique used in Pain Reprocessing Therapy to manage chronic pain by helping the brain learn to respond to body sensations, particularly pain, without fear or negative associations. It involves focused attention on physical sensations while simultaneously cultivating a sense of safety and curiosity, according to Pain Psychotherapy Canada. They are a team of social workers who work in the chronic pain sphere. And you can access their site here
https://www.painpsychotherapy.ca/our-team

Core Principles:

• Mindfulness and Safety:
  Somatic tracking emphasizes paying close attention to the physical sensations in the body, especially those associated with pain, while simultaneously cultivating a sense of safety and curiosity.
• Neuroplasticity:
  It leverages the brain's ability to reorganize itself and change its neural pathways, allowing it to reinterpret pain signals through a lens of safety.
• Reducing Fear:
  By observing pain sensations without fear or negative emotions, the brain can learn that the body is safe and in no danger, which helps to reduce the pain's perceived intensity.
• Re-evaluating Sensations:
  Somatic tracking encourages individuals to re-evaluate the meaning of their pain sensations, shifting from a perspective of fear to one of curiosity and acceptance.

How it Works:

1. 1. Comfortable Position:
   Find a comfortable position, whether sitting, lying down, or standing.
2. 2. Body Scan:
   Gently scan your body to notice where you feel any sensations, including pain, fatigue, or other physical sensations.
3. 3. Focused Attention:
   Direct your attention to a specific sensation and observe its qualities: intensity, location, type (burning, tingling, etc.), and any changes it undergoes.
4. 4. Neutral Observation:
   Observe the sensation without judgment or emotional reactivity, allowing yourself to be curious about it.
5. 5. Safety Reappraisal:
   Remind yourself that your body is safe and that the pain is not a sign of danger.
6. 6. Positive Affect:
   If possible, try to associate the sensation with a positive feeling or emotion.
7. 7. Gentle Exploration:
   Continue to explore the sensation, noticing any changes that occur and cultivating a sense of curiosity and acceptance.

Benefits:

• Reduced Pain:
  By reducing fear and negative associations with pain, somatic tracking can help to alleviate chronic pain.
• Improved Body Awareness:
  It enhances awareness of physical sensations, allowing individuals to better understand their bodies and respond to them in a more effective way.
• Enhanced Emotional Regulation:
  By learning to manage pain through somatic tracking, individuals may also improve their overall emotional regulation.
• Reduced Stress:
  Somatic tracking can help to reduce stress and anxiety associated with chronic pain, as it encourages a more mindful and compassionate approach to the experience.
  
  

 

[oldtimer]

Yes @hibiscuswahine, what you describe is how my friend described it. Being a LP convert, she probably overplayed the brain training aspect.

I have intuitively used some aspects of somatic tracking, as described by AI, more times than I can count. I'm just an ordinary person so I presume it's an innate way of dealing with pain that is as old as the human race.

I had occasion to use it a few weeks ago when I was bitten on the end of my little finger by a bat. That didn't hurt much but the three injections around my fingernail did. The doctor warned me it would hurt so I instantly decided to note the pain and be curious about it. At the same time I deliberately started a conversation with the nurse about something entirely unrelated to distract myself. It's a lot harder to maintain with very severe pain that goes on for minutes but it certainly helps to get through it without panicking. I have never thought of it as anything but a logical and obvious way to handle acute pain.

In my experience as someone with a number of pain and painful conditions, I have found that there are times when distraction works better, and others when noting the pain is the way to go, and others when painkillers are the only solution.

Edited later: I had a look at the website, the testimonial of the founder who claims to have cured his fibromyalgia, and the video about the nature of neuroplastic pain. Blind them with 'science'!

 

[Utsikt]

You can just imagine the response if they tried to make these claims for fatiguing conditions such as Parkinson's or MS or lupus.

Silje Reme of the OCFC has a study on pre-operation hypnosis of breast cancer patients. It was funded by the Norwegian Cancer Association that gets 3-400 million NOK a year in donations that mostly goes to research (~£20-30 million).

CBT is often promoted for MS based on the same faulty models about fatigue.