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

by Joelle Marlow

ME/CFS patients face two significant obstacles to meditation practice: a dysfunctional autonomic nervous system leading to frequent triggering of the fight flight response, and ‘brain fog’.

These barriers can seem especially disheartening to beginners who are learning, but they don’t mean we should stop trying. However, forcing oneself, feeling like a failure and getting more anxious as a result (all common experiences among our members) are clearly not helpful approaches either! Let’s look at constructive methods of working with the mind-body landscape ME creates: treatment (this page), meditation as a healing attitude, and aids to concentration.

Treatment

There are many views and much controversy surrounding ME/CFS and its treatment and plenty of other web sites addressing this area. Here, we will briefly summarise some mind-body approaches that some of our members found helpful.

Treat the brain circulation and brain nutrition

Dr David Mason Brown advises that first and foremost "the brain circulation has to be treated. The priority is correcting the brain and pituitary circulation. It is like coming out of hibernation. Once the brain circulation is working again, then the meditation and other skills start to return." For this, the drug Nimodipine is used. (As this product is not licensed for ME/CFS on the NHS it can be difficult to obtain via your GP.) For ME, doses can be as small as an eighth of a tablet - a fraction of the usual dose for other conditions. Another part of the treatment is the herbal product Gingko to improve brain circulation. He warns against using large doses of this herbal product. A final, vital component in the process of improving mental clarity "is the brain nutrition and the removal of pollutants, both environmental and internal (neurotoxins).” Products used for this include the amino acid supplement l-Glutamine and Prime Directive, a prebiotic superfood.

Nutritional and herbal treatment to detoxify

Nutritional and herbal treatment can lead to significant improvements in fatigue and cognitive symptoms, if not recovery. For a library of articles, see immunesupport.com. However there are no guarantees - and methods or products that work for some do not necessarily work for others. It is always better to seek advice from a registered nutritionist: try British Association for Nutrional Therapy or Institute for Optimum Nutrition.

Dosage

If this isn’t possible, those self-administering supplements and herbs must exercise caution with dose levels stated on packaging. ME/CFS patients’ toxicity levels can be so high that unpleasant detoxification reactions can occur on the smallest of doses. Only increase incrementally after waiting for adverse reactions to subside.

Supplements and herbal products vary enormously in quality, so it is better to use companies which are trusted enough to be used by qualified professionals. Many of these suppliers employ qualified nutritionists who can provide basic advice by telephone.  Reputable suppliers include:
Biocare, Blackmores, Safe Remedies, The nutri centre, Regenerative Nutrition and Trace Minerals UK.

Changes in diet

- If you can’t afford expensive treatments mental clarity as well as energy levels can be aided by changes to diet - giving up sugar, caffeine and wheat can help with symptoms such as dizziness, light headedness and cognitive problems. It is important to drink plenty of water, fresh and organic foods, and eliminate processed foods. Introducing protein and complex carbohydrates with each meal and snack, and eating small amounts often, leads to less extreme fluctuations in blood sugar and therefore better concentration and energy levels. For a more in depth analysis of dietary recommendations for CFS/ME/Fibromyalgia see immunesupport.com.

‘But I can’t relax!’

 - some ideas to support the nervous system
If you have an inability to relax this will create barriers to pacing and resting sufficiently. In order to support their attempts to meditate our members have experimented with different preparations - herbal, nutritional or pharmaceutical - to help the nervous system. Users have found that the following products helped with calming the nervous system: a good quality vitamin B complex; magnesium and calcium; 5HTP; Valerian; GABA. However do not combine different herbs or nutrients without seeking advice, unless they are in a combined product which has been balanced safely, eg. Biocare Adrenal supplement AD206; Higher Nature Chill Food Formula. And be especially careful about combining herbal sedatives prescribed medication - it is always advisable to seek professional advice. Burning lavender oil in a burner beside you is a soothing support when the nervous system feels over stimulated.

Other therapies and approaches

Adrenal Stress Index

For sleep disturbance and blood sugar problems, as well as symptoms of feeling ‘wired’ at one end of the spectrum or ‘doped up’ at the other, this test determining the stress hormone output through out the 24 hour cycle, can be arranged through private practitioners and nutritionists (not the NHS). Imbalances can then be corrected by the practitioner using selected herbs and nutritional supplements.

Physical therapies can also aid relaxation so long as they are gentle enough and transport is possible for you. Craniosacral therapy or cranial osteopathy has had beneficial effects for some of our members. As well as working very deeply to support the body’s innate healing mechanisms by working with the rhythms of cerebrospinal fluid, it can be a deeply soothing treatment. (Interesting article on this at Immunesuport.com).

Hyperventilation treatment

Many experts, including Dr Myhill, have noted the predominance of hyperventilation in ME/CFS. Some health commentators feel that hyperventilation is a widespread problem and epidemic in Western society. So what can we do to work with this?

Your GP may agree to refer you to a respiratory unit specialising in these problems. Some complementary health practitioners specialise in breath work and can teach you to breathe from the diaphragm rather than the upper chest, as well as directly addressing any anxiety relating to breathing. The Buteyko method of treatment, renowned for its excellent results with asthma patients, is designed to assist in reducing hyperventilation and can also be helpful. It is quite expensive, but it is a complex procedure and clients need to obtain individually tailored exercises.

Judy did autogenic treatment, and recommended the British Autogenic Society. “Also look up limbic breathing on the Web. I have found both helpful to some extent. Sometimes I use elements of both of them together.”

Spiritual Psychotherapy

When you practice, all the muck comes up,’ was Michael’s joke. He found that Buddhist practice didn't so much solve his problems as heighten his awareness of how much he suffered, and bring him face to face with his darkest pain. Sometimes it can be too painful to continue alone, and you need the kind of in depth emotional support that friends and spiritual teachers can't offer. If your practice seems emotionally draining rather than nourishing, or is bringing up painful issues from your past, then long-term emotional support in the form of psychotherapy may be needed. Many therapists today use a psychospiritual approach - integrating the physical, mental and spiritual ways in which you relate to yourself and others. A growing number of therapists are trained in, or directly influenced by Buddhist teaching and/or practical mindfulness techniques in their work. Core Process psychotherapy, founded by Maura Sills of The Karuna Institute, is an example of training which is explicitly based on awareness methods (and a method to which the founder of Stillpoint owes her healing, and her inspiration to share mindfulness with others). For practitioners in your area, tel: 01647 221 457.

'There are always ways...' - Meditators with ME share tips

Vicki Mckenna (Glasgow) responded to our discussion about how symptoms can get in the way: "I was talking to my contact person on the Awakened Heart Course" [see Stillpoint handout on contacts and resources, Reaching Buddhism.] "and he reminded me that when I cannot meditate easily because of poor cognition I need to see that that very experience (of poor cognition) is my meditation - to strive for more (clarity focus etc) is to become stressed (attached to preconceived ideas of how it should be) which is far removed from the goal of meditation. In other words --acceptance of where you are is the key to letting go of suffering. I found it helpful to be reminded of that." Vicki’s book A Balanced Way of Life is written from her experience as an acupunturist and Post Polio sufferer (an illness very close to ME, affecting Polio survivors). The book contains meditation, breathing and chi kung exercises and looks at a Taoist approach to illness. For further information see Vicki McKenna's website

Dido Dunlop (Oxford) holds meditation sessions for ME sufferers says: "I don't see any reason to feel we can't meditate properly...I was already an experienced meditator before I got ME, and over the last 20 years have worked carefully on ways I can do the practises... It took me a long time to figure out my own way of doing things, how to cope with having to lie down, having no concentration, no staying power and all the rest... I think ME actually gives us some great advantages. We can make special use of our mental unclarity, and exhaustion, and self-esteem problems...I think I may have been able to go much deeper in many ways because of ME. As to concentration - since I got ME I learned to not even try to push my concentration, but to just let it phase in and out as it wishes. When it tunes in, then I do whatever I'm doing - focusing on body sensations or whatever; and when it vagues out I just relax and vague out too till it returns. So in an hour of lying down (I never attempt to sit up to meditate) I have many patches of a few minutes when I have been able to focus. I think this is a bit different from just letting myself become distracted. I know I'm still in a gentle sort of meditation space, and I'm not wearing myself out with pushing."

Marie (Sheffield) says her ME gives her "increased motivation to meditate. Life feels so awful if I don’t do it....When I first got M.E. and suffered the agonies of having to give up all the things I loved best, I worried I wouldn’t be able to meditate - that I’d have to give that up too. In fact it was about the only activity I could still do. When my brain is bad (fuzzy and foggy) I don’t attempt anything fancy, just awareness of my breath. Afterwards I usually find my brain function has improved a bit."

Joanne says, “I have noticed that my visual imagination is improving since developing a mindfulness practice. The advantages of this if you're housebound are obvious: if ME has imprisoned me in my own home so I can't travel, or be out in the world, at least now I can 'travel' in my mind! I seem to be able to enter into memories, imaginary experiences - even other people’s shoes - more easily. So I am in no doubt that the stillness the ME life imposed on me has changed the way I relate to life in subtle and profound ways.”

Kate Bruce (London) adds: "I slowly strengthen the ability to observe whatever arises - the symptoms, the illness, the head stuff... often its just simply enough to just breathe and be aware of the breath, just return to it over and over again, just come back to the present moment."

DISCLAIMER Information here does not replace medical advice.
Readers are advised to consult a qualified professional.