A Mindful Approach to Chronic Fatigue Syndrome (ME/CFS) and Neurological Retraining
Neurological Retraining concerns the attempt to repair, using mindfulness techniques, to the extent possible, whatever neural damage has occurred. These techniques focus on forming new ‘neural networks’ that take over the functioning of the damaged neural networks. ’Neurological retraining’ is not a cure for a stroke victims and nor is it presented as a cure for CFS patients but these practices may be able to improve quality of life and health to some extent in some patients.
The effort required to recover from CFS is an exercise in discipline and hopefulness, not determination and striving” Dean Anderson, Recovered CFS patient.
Focus – A most fundamental aspect of a neurological retraining program is ‘focus’. Neurologists dealing with stroke victims and others have found that one must focus on the task at hand in order to produce results. (This requirement essentially cuts the thinking process out of the equation; these are experiential exercises not exercises in thinking. When you find yourself ‘thinking’ during these exercises – note that you just stopped doing the exercise. ) Many chronic fatigue syndrome (ME/CFS) patients do have difficulty with concentration but note,that building this type of focus is like building a muscle (perhaps not a great analogy for people with CFS ), the ‘concentration muscle’ can get stronger over time.
Consistency – The aim here is rewire parts of the brain. This requires overcoming the pull of the present system and slowly shifting over to a new one. Consistent effort provides the foundation that allows one to keep building on past progress.
Small Really is Beautiful – This type of training generally works best when you focus on the smallest things; the minutiae in life – that little negative thought, that little movement, the way ones diaphragm moves, that sudden change in ones breathing patterns – those types of inquiries, in my experience produce results.
‘Being Here Now’ – appears to be critical to this type of work. Getting the assessing/measuring/planning part of the brain (left hand side of the brain) to calm down and the calm, soothing, ‘spiritual’ side of the brain (right hand side of the brain) more sway is a natural outcome of this type of work. Several of the exercises in this section are specifically designed to get the right brain more active. To do that, however, requires
Persistence – The neural remodeling process takes time. Paradoxically rushing things – trying to get well – only impedes the process. Dr. Campbell notes that his journey to health took place very slowly, 1-2% a month he estimated, but by following his own ‘mindfulness’ program he was able to recover fully over several years. He persisted in his practice through times when it seemed like nothing was happening which takes us to the idea of…
‘Plateauing’ - Getting stuck in one spot or plateauing is probably inevitable with this type of therapy. Researchers initially gave up on neural retraining therapy for stroke victims after a time because they would inevitably plateau at some point and seem not to improve further. Further research indicated, however, that they’d given up too soon – what had appeared to be a plateau was actually a period in which the brain was preparing the foundation of new neural networks; if they had continued to work the patient would have continued to progress.
Christopher Reeves, for instance, showed substantial improvement shortly before he died ( from the effects of an infection) years after he’d suffered a devastating spinal injury. Researchers now believe that even when no apparent progress is being made the brain may be preparing the neural connections to take its next step forward.
Small Steps Can Accumulate Over Time – Unlike supplements or drugs whose efficacy peaks at a certain level, the power of these processes can grow over time. If you’re making very small steps forward with these practices you’re encouraged to continue them even if their power at that time seems insignificant relative to your symptom picture. Plus these practices are good….
“My health improved as the program developed. The pace was slow but steady: 1-2% a month over a period of about four years”
Dr Bruce Campbell, Creator of the CFIDS and FM Self-Help Program, Recovered CFS Patient
Adjuncts To Other Treatments – Besides the fact that everyone, healthy or unhealthy, could benefit from these practices, consider the fact that these types of practices appear particularly effective at improving autonomic nervous system functioning and immune functioning; ie they may be able to improve the efficacy of other treatments you are currently pursuing. Just as with these other treatments its always best to….
Make it Real: Create A Plan – It’s simply too easy to easy for difficult practices like these to slip away amongst the demands of life. Its best to set specific targets for these exercises; ie I will do a body scan five days a week from 8- 8:30 am. I will engage in sitting meditation every other day from 2-2:30 pm, block it out in your calendar and then when you do the exercise check it off. If you use a plan the body will actually learn to enter into these states at a specific time of the day.
The Time Element
These practices take work and ‘attention’ and a significant time element, particularly at first. Dr. Friedberg, a clinical psychologist with ME/CFS, has found that devoting a good chunk of time during the beginning stages is very helpful in allowing patients to receive significant benefits from these practices.
Dr. Friedberg suggests chronic fatigue syndrome (ME/CFS) patients start with 10-20 minutes of relaxation exercises twice a day for the first two weeks and increase it to 30 minutes twice a day the third week. He states that an hour a day ‘is the bare minimum necessary to put your illness on the improvement track’ and he strongly recommends that you do two hours of relaxation exercises; an hour in the morning and evening or break it up into four 30 minute blocks scattered throughout the day.
In the Amygdala Retraining Program Ashok Gupta also recommends two hours of exercises a day beginning with an early morning session he calls the ‘hour of power’. (Note that you don’t need to do two hours of mindfulness activities a day to get results but if you can then you’ll probably get better results.) As the exercises propel you into a more relaxed, healthful state you can get by with doing less of them.
My experience (eg my lack of discipline in this area) has been that devoting a good chunk of time to these practices significantly enhances them but that practicing them in small chunks throughout the day (often for only seconds at a time) can be helpful over time. Many of these practices are, in fact, done in ‘real life’ – in the midst of our daily lives – instead of in special times set aside for them.
The Right Mindset for Progress
There are three broad ways to approach these kinds of therapies, two of which can sabotage it.
- THIS IS IT! – People with the “this is it!” approach posit that this approach will cure their ME/CFS; they dive headlong into the therapies, get some results but then abandon them when they fail to achieve complete wellness.
- ‘THIS ISN’T IT AND I’M GOING TO PROVE IT ‘- People with this approach have so many doubts about the program that they essentially never really give it a chance; they dip their toe enough to confirm this isn’t it and then tell the world what a crummy program it was.
- ‘SKEPTICAL BUT CURIOUS’ – The best way to approach these types of therapies is with an healthy dose of skepticism but with enough curiosity to approach them with an open mind.
A good place to start, and arguably the most important, is the section on Finding Your Energy Envelope