Three experts discuss ME – Sunday Telegraph, 26 September 2010

In the Sunday Telegraph this week, their ‘LifeCoach’ panel of three health and fitness experts answered a question from a reader about ME.

Jane George emailed the paper to ask: “My friend (in her mid-forties) has M E. She has lots of medication and goes to an M E group, but I would like to know if I can help her further in any way.”

Nutritionist Sarah Stanner replied:

Sufferers of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have been found to be marginally deficient in a wide range of nutrients including B vitamins, vitamin C, magnesium, zinc and essential fatty acids. So it is very important for sufferers to eat a balanced and varied diet to ensure that they are getting plenty of all the nutrients they need. This means eating a variety of starchy foods (such as wholegrain breads and cereals, wholemeal pasta, brown rice, potatoes); sources of protein (lean meat, fish, lower-fat milk and dairy products, eggs, beans); and plenty of fruit and vegetables.

Low iron stores are associated with fatigue so your friend’s diet should contain plenty of iron-containing foods such as meat, fish, egg yolk, dried fruits, pulses and fortified breakfast cereals. Vitamin C, which is found in fruit and dark green vegetables and potatoes, can aid iron absorption from non-meat sources. Although many diets claim that avoiding certain foods – such as yeast, sugar, wheat or dairy – can improve symptoms, there is little scientific evidence of benefit.

ME can affect or be affected by the immune system and some symptoms can be linked to food intolerances. If your friend suspects that this is the case, keeping a food diary may help to identify possible culprits. But she should seek medical advice before eliminating important foods.

Changes in weight commonly occur with ME, which can make recovery harder. Some sufferers lose weight as a result of poor appetite or nausea or because they lack energy to shop or prepare food. Small meals and snacks rather than larger meals can help prevent nausea, and opting for quick and easy meals and energy-dense snacks (such as seeds, nuts and dried fruit) will help combat fatigue.

Others experience weight gain, probably due to declining activity levels. If so, high-fat/sugar foods such as biscuits, chocolate, cake, crisps and sugary drinks should be limited.

Many nutritional supplements including vitamins, minerals, fatty acids (omega 3s, evening primrose oils) and co-enzymes claim to help tiredness and other symptoms of ME. Until there is further research, it is not clear if high doses of any of these will provide specific benefits. But a multivitamin and mineral supplement (with no more than 100 per cent of the recommended daily intake) may be useful, especially if appetite is poor. If your friend is housebound or not able to go outside much, a vitamin D supplement would be recommended.”

Fitness instructor Tony Gallagher wrote:

“I think your friend is lucky to have someone like you who is concerned about her welfare.

The ME Association (www.meassociation.org.uk) is a national charity that provides information and support to friends, carers and people who have ME. The main symptoms include exercise-induced muscle fatigue and weakness in addition to post-exertional malaise/symptom exacerbation. The ME society, as it is also referred to, has useful leaflets on managing energy, vitamins, alternative and complementary therapies, coping with pain and sleep disturbance.

In a survey by the MEA of more than 2,000 patients, more than 70 per cent reported a greatly improved or improved result when using the Management of Energy approach called pacing. The aim of pacing is to remain as active as possible, but to avoid the relapses resulting from overexertion. Effectively, this means stopping an activity when patients feel they have reached that point where pleasant tiredness becomes unpleasant, where arms or legs begin to feel weak, or where they start to feel unwell or sick. The key, for them, is to listen to their body to ensure they do not make their condition worse than their pre-exercise state.

The National Institute for Health and Clinical Excellence advocates, among other things, cognitive behavioural therapy and graded exercise therapy.

As regards exercising, you can well appreciate that this alone is not a panacea for all ills, as what might work for one person might not work for another.

Your friend, however, may find relaxation techniques or breathing exercises helpful, coupled with a form of gentle exercise such as yoga, T’ai Chi or chi gung. If able, she might try taking a short walk outside or just walking around the house. Even if confined to bed at times, simply sitting at the edge of her bed for 15 seconds or so can be of benefit.

The Action for ME group (www.afme.org.uk) offers support for patients and friends and may act as a useful source.”

And Dr Dan Rutherford added:

“ME/CFS remains a challenging condition for many reasons. Our understanding of what it is and why it happens is poor. The response of the medical profession to this common and frequently disabling condition is still variable and many patients experience a feeling of being dismissed as “the tests are all normal”. ME/CFS is a good example of how little we really know about the body works, but also how closely linked the functions of the body are to those of the mind. This is something well known to Eastern forms of healing practice that has got a bit lost in our technologically driven Western medical system.

In short, treatment for ME/CFS is much more about support than cure, about going with the flow of the illness but trying to nudge it in the right direction over time. Tony and Sara have covered these points well.

I would emphasise that just being there, being as helpful as you can without feeling that you need to come up with some sort of magic solution to the problems that ME/CFS can put in her way, is a very powerful way of helping her. For more information see Dr Charles Shepherd’s video and the other information on www.nhs.uk/conditions/chronic-fatigue-syndrome/Pages/Introduction.aspx.”

Full article here.

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