2: Meditation with ME... obstacles

by Joelle Marlow

Obstacle no.1: the stress response

Characteristics of CFS include: Damage to nerves - Central nervous system (psychological problems, psychiatric, sleep, brain fog etc); Autonomic nervous system (sweating, temperature control, hyperventilation, etc) and peripheral nervous system (numbness, tingling etc). Dr Sarah Myhill, Diagnosing and treating CFS

The initial illness often follows prolonged periods of stress, which compromise the immune system; it is triggered by a viral infection. Links have also been made with environmental pollutants that are toxic to the nervous system.

When we encounter a situation that causes stress, the autonomic nervous system responds without our conscious control, and a series of changes occur in the body. A vital role is played by our adrenal glands - actually two glands in close proximity. The adrenal medula is an extension of nerve cells of the sympathetic nervous system, secreting adrenaline, which creates physiological responses that enable the body to call forth the extreme strength, speed and reaction time that were necessary for survival in prehistoric times. Attached to medula is the adrenal cortex, stimulated by pituitary hormones to release adrenal cortical hormones, such as cortisol. In effect, although mobilising the body, these responses suppress healing processes and the immune system.

This ‘fight-flight’ response remains with us from the days when we needed to escape a predator quickly. It wasn’t designed for a sedentary life, in which the nervous energy stays stuck within our bodies- in traffic jams, in offices; nor for the relentless repetition of different stress triggers we meet in a complex, fast-paced environment.

"my body was like a broken machine, my nervous system on overdrive, and I had no control over it."

Imbalances in the endocrine system

So things start to go wrong in the body. Unnaturally high levels of cortisol lead to other imbalances in the endocrine system, and can be very difficult to correct, long after the initial sources of environmental stress or viral infection have gone and ME/CFS diagnosed. These problems are responsible for a range of symptoms differing from one patient to another, from the 'drugged' feeling causing abnormally long periods of sleep, to the wired, 'manic' associated with insomnia and a nervous system that feels constantly over-stimulated and ‘jittery’. When these tortuous symptoms are accompanied by flu symptoms, cognitive disorders, migraine/ headache, dizziness and painful muscles, is it any wonder settling down to meditate can be so hard?

“My body was like a broken machine”

Learning to meditate can be a huge challenge for those recently diagnosed. These people are only beginning to come to terms with a life dominated by disorientating symptoms and extreme discomfort. Joanne, now almost recovered, remembers: “I knew meditation was what I needed. But whilst I desperately wanted to get new skills to relax, after overwork and stress had contributed to my condition in the first place, I had a sense that my inability to slow down my body’s processes was innate - out of my conscious control. It was so frustrating!” She adds, ‘my body was like a broken machine, my nervous system on overdrive, and I had no control over it. But I consoled myself I had to just go slowly and I wasn’t managing to relax for medical reasons - it wasn’t my own lack of motivation or effort, and I had to be patient.”

Learning to meditate can be a huge challenge for those recently diagnosed. These people are only beginning to come to terms with a life dominated by disorientating symptoms and extreme discomfort. Joanne, now almost recovered, remembers: “I knew meditation was what I needed. But whilst I desperately wanted to get new skills to relax, after overwork and stress had contributed to my condition in the first place, I had a sense that my inability to slow down my body’s processes was innate - out of my conscious control. It was so frustrating!” She adds, ‘my body was like a broken machine, my nervous system on overdrive, and I had no control over it. But I consoled myself I had to just go slowly and I wasn’t managing to relax for medical reasons - it wasn’t my own lack of motivation or effort, and I had to be patient.”

Dr David Mason Brown, an ME specialist and recovered sufferer with many years' experience of using meditation with patients as well as in his own recovery (see his website), clarified many of the problems ME sufferers contacting us described, when overwhelming physical symptoms seem to militate against meditation practice.

and the fight-flight response

Mason Brown pinpoints a factor linking fatigue related illness and the stress response, which explains why ME patients can incur relapse after over-exertion and experience involuntary ‘nervous’ reactions to minor stimuli. He explains that when an ME/CFS sufferer is ‘decompensated’, their body is forced to resort to the fight-flight response to carry on when rest is what is needed. "When a person ‘compensates’, they are able to keep going even when they are not feeling well; decompensating happens where a person's compensating abilities have become exhausted and they are suddenly no longer able to compensate". This is why patients may feel as though their system is getting more 'stressed' the more ill/exhausted they are, yet the reaction does not reflect their conscious emotional state. The fight-flight response, an 'emergency' stress reaction, is last thing we need. It not only stimulates an already over stressed autonomic nervous system, but reflects the fact we are doing more than our finite energy levels will allow at this time. So it becomes clear why meditation can play a vital role in symptom management and recovery. By becoming aware of sensations in the body, we notice signs that our energy bank is running low. Through trial and error, we slowly learn to pace activity with rest to maximise the limited energy we have at our disposal - and avoid unnecessarily triggering the stress response.

Obstacle no. 2: Brain fog

"The aim is to be in the healing Alpha state as much as possible", says Mason Brown. But although he recommends meditation to his patients, he admits to the paradox: "ME sufferers often can’t meditate. The difficulty in ME is our brain fog".

Here is the difficulty. What is needed in meditation is concentration. Stillpoint member Maggie complained, “I know we aren’t supposed to be ‘trying’ to do anything when we meditate, but I have found with a fogged mind even the mental 'letting go' does take energy -mental energy.” It’s difficult if not impossible to 'watch the thoughts' as one is meant to do when lacking any control over concentration, and the mind feels like cotton wool.

Mason Brown uses different analogies to explain the cognitive problems facing those meditating with ME. It’s "as if [ME sufferers] have decreased power to the computer, so that the software will just not run properly," his web site says. In a talk given to Edinburgh MESH for whom he is medical advisor, he compared the ME brain trying to meditate to an aircraft trying unsuccessfully to take off without the engine working. In other words, the mental focus has to be sustained to remain in the Alpha state or 'hold' the experience. But he adds, "even with brain fog, there are simplified [meditation] techniques we can use. It is finding what each person can do and not do." A long-term practitioner himself now, he says, "I can usually clear my occasional brain fog within an hour."

Problems with meditation - Members Experiences

Vanessa is glad "to have contact with others who seem to be struggling like I am with meditation and the quest for stillness", adding, "I suspect that those of us with neurotically busy minds are the sort who are prone to getting ME in the first place and then we know a quiet mind is exactly what we need but find it so hard to achieve. Except that meditation isn't meant to be about achieving anything - so that's difficult too!"

Many members mention that their problems meditating seem directly related to their illness. Jane recalled that "during the extremes of the ME although focused meditation was difficult, I used it more as a means of calming myself and relaxing."

We all know the problems of a 'busy' mind, but comparing the experience of this as a healthy person to having ME, I feel it's on a different scale, and harder to control. This overstimulated, 'nervy' feeling can dominate our quest for stillness. For other sufferers, or at other times, it can be the opposite: sleepiness and brain fog takes over.

Margaret, who is severely affected, laments, "I find it so hard to hold my attention on anything, and it's worse now than ever, but I persevere... meditation has never been easy and latterly even harder with so little mental energy and attention."

Rosie's problem seems to have a related problem, alternating from over-stimulated to sleepy, making it impossible to 'hold' the focus needed: "my approach is to try and find stillness," but she adds, "weirdly, I find this quite exhausting, and also if I'm already feeling very ill I can't relax, or if I do I fall asleep!"

::next: Meditation and ME... some solutions (maybe)