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What is ME/CFS?What is ME/CFS?
Definitions of ME/CFSDefinitions of ME/CFS
History of ME/CFSHistory of ME/CFS
How Common is ME/CFS?How Common is it?
What Causes ME/CFS?What Causes ME/CFS?
Other Causes of FatigueOther Causes of Fatigue
Management of ME/CFSManagement
Current Research on ME/CFSCurrent ResearchCurrent Research
Recovery Rates in ME/CFSRecovery Rates
Useful InformationUseful Information

 

Management of ME/CFS

Please note that this section does not recommend any particular form of treatment. It merely seeks to provide information for the sufferer to come to his/her own informed opinion. Always consult professional medical advice.

According to Dr. Charles Shepherd (1999), “coming to terms with the many restrictions imposed by the illness, remaining positive about the chances of recovery, and adopting sensible changes in lifestyle are the three most important aspects of self-help which require careful consideration.”[1]

It is important to note that most people eventually recover from the illness to some extent. Based on current estimates, around 20% of sufferers with ME/CFS manage to recover within 2-3 years. Those who do not fall into this category tend to make a slow and limited recovery, often experiencing cyclical periods of improved health and relapse.  Unfortunately, there is a minority who fail to improve substantially and have to endure several years of debilitating illness.[2]

Pacing

One of the hard lessons many sufferers have to learn, is the importance of pacing yourself: both physically and mentally.  Sufferers essentially need to tread the fine line between rest and activity.  Rest is particularly crucial in the early part of the illness.  Sadly, a great deal of sufferers fail to get an early diagnosis from their Doctors, and this can result in many sufferers struggling and making their symptoms worse.  After the acute phase has passed, it is important to, within your limits, very gradually increase your activity levels.  This is because excessive rest may lead to muscle wastage and can make you even weaker than you are.  However, care should be taken to undertake any increase in activity within your own ‘envelope’ so that you do not overdo it and cause a relapse and worsening of your symptoms (Macintyre, 1998; Shepherd, 1999).

As each individual's limitations are different, striking this balance is simply a matter of trial and error and is thus by no means an easy task. On good days there is a strong temptation for people to try and catch up on what they have been missing out on and many individuals end up overdoing it and relapsing.  Clearly, before you think of embarking on any form of organised activity you need to first consider what stage of the condition you are in; and secondly, what your symptoms are and how bad they are. Hence, if you have severe muscle problems and/or are in the acute phase of the illness, exercise should be taken with caution (Shepherd, 1999; Macintyre, 1998). It is also worth noting that, with ME/CFS, it is quite common for there to be a delayed reaction of up to several days (in terms of a worsening of symptoms) after exercise/activity.

The issue of graded-exercise programs has become somewhat of a controversial subject within ME/CFS. Some of the controversy has perhaps come from Doctors misinterpreting the 'graded' element of these programs, pushing patients too hard; and from not sympathising with their concerns nor understanding the varying degree of symptoms experienced by sufferers.

One study in the UK, undertaken at St. Bartholomew's Hospital, appeared to demonstrate that a carefully tailored program of gradually increased aerobic exercise (based on walking) may be of benefit to some, but not all sufferers. Of the 66 patients that took part in the year-long study, 47 managed to complete it and, of those, 36 stated that they had substantially improved in terms of functioning. However, it is important to note that for some on this study, simply getting out of bed and walking across the room was the starting point.[3]

Similar findings have also been reported in some research carried out in the UK, in Manchester.[4]  The 6 month trial involved graded-exercise of 20 minutes three times a week together with fluoxetine  (Prozac).  However, the drop-out rates were higher, with only one third completing the full-programme.

Nevertheless, another study carried out in the US shortly afterwards by Dr. Charles Lapp from Duke University Medical Centre, using a braked bicycle, highlighted the need for caution.   The report from the experiment’s findings indicated that of the patients involved in the study, “74% experienced worsening fatigue and 26 stayed about the same after maximal exercise.  None improved.  The average relapse rate lasted 8.82 days, although 22% were still in relapse when the study ended at 12 days…The data would suggest that PWCs [people with Chronic Fatigue Syndrome] are pushed to maximal exertion, they frequently relapse for long periods of time.”   The study also suggested that “PWCs can perform mild to moderate exercise (or work) without relapse, providing they have frequent rest periods.”  It was recommended that exercise be limited to less than 5 minutes followed by rest.[5]

Drugs & Orthodox Medicine

Over the last few decades a number of different drug treatments for ME/CFS have been investigated.  Sadly there has not as yet been a conclusive treatment or cure for the condition.  

A great number of the trials undertaken have had mixed findings and hence consistent results have been hard to replicate.  Furthermore, a considerable number of studies have been based on only a small number of patients.  As a consequence, care needs to be taken when viewing the results of such trials. 

According to Dr. Charles Shepherd (1999), positive findings have been reported from trials involving Ampligen, evening primrose oil,[6] magnesium sulphate injections[7], moclobemide (Manerix), and phenelzine (Nardil).  Whereas no advantage has been reported from the use of acyclovir, fludrocortisone, fluoxetine (Prozac), hydrocortisone, terfenadine (Triludan), transfer factor and injections of vitamin B12.  There have been contrasting results from studies using amantadine [8] and immunoglobulin injections.[9]

For further information on Drug treatments and ME/CFS, there are several good books by medical professionals that cover the orthodox treatment of ME/CFS in much greater detail.  These include: a more medically-orientated book by one of the leading experts in the UK - 'Chronic Fatigue and its Syndromes' by Drs. Simon Wessely, Matthew Hotopf & Michael Sharpe (1999); and the excellent more popularly-orientated books, 'Living with M.E' by Dr. Charles Shepherd (1999) and 'M.E/Chronic Fatigue Syndrome' by Dr. Anne Macintyre (1998).  However, any information provided should not substitute consulting a qualified physician or specialist.

Recently, a US Food and Drug Administration (FDA) approved trial of an energising co-enzyme, NADH (ENADA), was conducted at Georgetown University in Washington DC with 26 ME/CFS patients.  NADH is the active co-enzyme form of Vitamin B3, which naturally occurs in all living cells and is generally classified as a food supplement. The crossover, placebo-controlled, randomised and double-blind study showed that those taking the ENADA NADH were four times more likely to improve than those taking the placebo.  Almost a third of those taking part experienced an improvement in energy levels, a decrease of symptoms and an enhanced quality of life (after as little as one month of taking the supplement).[10]

However, it is worth noting that this was only a small trial and although there are many who benefit from NADH, as with any supplement, there are occasionally people who are sensitive to it.  A further longer, open label, follow-up trial has claimed that so far 72% of patients have reacted positively to it, although much more research is needed before its benefits can be reliably confirmed.  Studies conducted to date have not reported any adverse effects with up to one year or more of use, and no problems are expected with further longer-term use.   

 Good Nutrition

As with anyone suffering from a chronic health condition, it is important to ensure that you have a good intake of nutrients.   According to Dr. Anne Macintyre (1998), good nutrition in ME/CFS is important because:

  • Deficiencies of essential nutrients may have developed before the illness started.”
  • Digestion and absorption of food may be impaired.  This can result from damage to the lining of the small intestine, or pancreatic involvement from an intestinal infection.”
  • The brain and immune system need a good supply of protein, essential fats, minerals and vitamins in order to function efficiently.”[11]

Is it worth taking supplements?

Many argue that good nutrition should be able to be obtained through a high-quality well-balanced diet.  However, as Dr. Jacob Teitelbaum (1996) states, “if you are low in vitamins and minerals – whether because you eat junk food and are not taking in the required nutrients or because you are consuming the proper foods but your body is unable to correctly metabolize them…a good multivitamin supplement is therefore crucial to your improvement.”[12]   Although there have been no reliable research trials, many sufferers claim to benefit from taking supplements.  However, it is also important to note that inevitably there is a minority of sufferers who can be sensitive to certain food supplements; and a particular supplement that works well for one person may have no effect on another.  

For those interested in taking nutritional supplements, it is always advisable to seek the advice of a qualified nutritional doctor.  However, many books on the subject offer some suggestions for suitable supplements for ME/CFS and general health. These include: Dr. Anne Macintyre’s book, ‘M.E – Chronic Fatigue Syndrome: A Practical Guide’ (1998); Dr. Jacob Teitelbaum’s ‘From Fatigued to Fantastic’ (1996); Dr. Alan Stewart’s ‘Tired All The Time’ (1993); Drs. Stephen Davies & Alan Stewart’s ’Nutritional Medicine’ (1986); and Dr. Charles Shepherd’s ‘Living with M.E.’ (1999).

Diet

If you find that you are sensitive to certain foods, and cut these out of your diet, make sure that you replace the nutrition you would have obtained from these sources.  For instance, if you cut out dairy products, it would be sensible to look to other sources of calcium. [13]    As sufferers commonly report alcohol intolerance as a reason for a relapse, it may be advisable to cut it out of your diet.

      

As a consequence of orthodox medicine's inability to find a cure for M.E./C.F.S, many sufferers turn to more alternative and complementary therapies.  There are may anecdotal reports of  people with the condition benefiting from such therapies, but alternative treatments have generally either not been as extensively researched or subject to the same kind of rigorously controlled trials as conventional medicine.

As there is an ever-increasing array if complementary therapies available, it is important to be selective, tending to opt for treatments that have either stood the test of time or have been subject to some research.  Always check whether the practitioner is a member of a registered professional body and is well-qualified. Watch out for anyone making unrealistic and unsubstantiated claims, such high and rapid cure rates, as Dr. John Campling states, "Anything that helps is a help. However, do be cautious. Be wary of a therapist who promises a cure." [14] Unfortunately, whilst many therapies are beneficial and many may help relieve some symptoms, there is not yet a 'magic cure' for the condition. 

Among the complementary therapies that may be worth looking into are: acupuncture, homeopathy, osteopathy, herbalism, naturopathy and aromatherapy.

         Acupuncture: Part of Chinese Medicine for centuries, this involves inserting extremely fine needles into specific locations around the body - acupuncture points or 'meridians.'  In particular, acupuncture may be especially helpful for those with muscle or bone pain, through its release of endorphins in the body and its potential effect on the autonomous nervous system.

There are many anecdotal claims of people benefiting from this form of treatment and this has been lent extra credence by the results from a trial of electro-acupuncture in fibromyalgia, a condition which shares many symptoms with M.E./C.F.S, where patients reported an improvement in 7 out of 8 outcomes.[15] These results appear to be encouraging and suggest that it may be worth a try if you can afford it.  However, as with any therapy, it is important to try it for at least a month to see if it is having any effect; and it may be worth trying another therapist before discontinuing, as each practitioner may treat you differently.

         Homeopathy:  Homeopathy originated from the work of Dr. Samuel Hahnemann almost 200 years ago, so it has stood the test of time.  It works on the principle of 'like treats like', and involves the use of remedies made up of very dilute constituents.  Homeopaths generally take a holistic approach to M.E./C.F.S and treatments will vary according to each individual case.  As a result, it is important to consult a properly-trained homeopath, rather than trying to 'do-it-yourself'. 

In a similar manner to Acupuncture, there are many anecdotal reports of sufferers finding some benefit from the treatment.  A double-blind trial which involved 64 M.E./C.F.S patients in the UK found that 33% of those who took a homeopathic preparation reported 'significant improvement', compared to 94% of the placebo group who stayed 'largely unchanged.'[16]  Other research articles have also explored its use with fibromyalgia,[17] and M.E./C.F.S[18].

For further information on the use of homeopathy, a critical review of the treatment for a number of medical conditions, was published in the Lancet in 1997.[19]

         Osteopathy: Osteopathy is essentially a treatment which physically manipulates the body to treat mechanical dysfunctions of the skeleton.  Its potential application in M.E./C.F.S. is related to the fact that it may help with back pain, as well as muscle pain and spasms. Osteopathy is becoming more and more accepted by the orthodox medical profession as a valid treatment.  As far as its potential effectiveness in relation to M.E./C.F.S.,  one clinical trial has been carried out by the University of Salford.  In this trial there were several patients who reported benefit from the manipulative therapy they received.[20]  

         Herbalism:  Herbalism involves the use of herbal preparations to treat a wide-range of symptoms.  The value and benefit of some herbal preparations varies, but according to Dr. Charles Shepherd, "there is no doubt that others do have genuine and beneficial therapeutic effects."[21]  Amongst those possibly worth considering are for instance, Evening Primrose Oil (clinically trialled with M.E./C.F.S patients)[22] and Ginkgo Biloba[23]. If you decide to take St. John's Wort, which has been found to be effective in the case of depression [24], it is important that your Doctor should be consulted beforehand, as new research has shown that it may interfere with the efficacy of other prescribed drug treatments.

         Naturopathy: Naturopathy takes a holistic approach to healing, trying to utilise the body's own natural healing powers as a basis for restoring health.  This will generally involve examining areas such as dietary modification and supplementation.

        Aromatherapy:  Aromatherapy involves the massaging of essential plant oils onto the skin, inhaling them or using them in a bath.  This can be a very relaxing and comforting treatment.


© Copyright Health Resource Ltd. 1999-2000

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References


[1] Shepherd, C. (1999) ‘Living with M.E.’ p.203.

[2] Macintyre, A (1998), ' M.E - Chronic Fatigue Syndrome: A Practical Guide' p.117. 

[3] Fulcher, K.Y. and White, P.D. (1997) ‘A randomized controlled trial of graded exercise in patients with chronic fatigue syndrome,’ British Medical Journal 314: 1647-52.

[4] Wearden, A., Morris R., Mullis, R et al. (1998) ' A double-bind, placebo controlled treatment trial of fluoxetine and a graded-exercise programme for chronic fatigue syndrome,' British Journal of Psychiatry, 172: 485-490.

[5] Lapp, C.W. (1997), ‘Exercise limits in the Chronic Fatigue Syndrome,’ American Journal of Medicine, (103) 83-4.

[6] Behan, P.O., et al., (1990), 'Effect of high doses of essential fatty acids on the post-viral fatigue syndrome,' Acta Neurologica Scandinavia, 82, 209-16. 

[7] Cox, I.M, Cambell M.J., Dowson, D. (1991) 'Red blood cell magnesium and chronic fatigue syndrome,' Lancet, 337:757-60.

[8] Plioplys, A.V, Pliolys, S. (1997), 'Amantadine and L-Carnitine treatment of chronic fatigue syndrome,' Neuropsycholbiology, 35:16-23.

[9] Shepherd, C. (1999) ‘Living with M.E.’ p.182.

[10] Forsyth, L.M., Preuss, H.G., MacDowell, A.L., Chiazze, L., Birkmayer, G.D., Bellanti, J.A. (1999) ‘Therapeutic effects of oral NADH on the symptoms of patients with chronic fatigue syndrome,’ Annals of Allergy, Asthma and Immunology’ (February), Vol. 82, No. 2.

[11] Macintyre, A (1998) ‘M.E – Chronic Fatigue Syndrome: A Practical Guide’.

[12] Teitelbaum, J. (1996) ‘From Fatigued to Fantastic’ p. 18.

[13] Campling, J. and Campling, F. (1998) 'Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome - M.E: Your Questions Answered,' p.11.

[14] Campling, J. and Campling, F. (1998) 'Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome - M.E: Your Questions Answered,' p.13.

[15] Deluze, C., Bosia, L., Zirbs, A, Chantraine, A., Vischer, T.L (1992) 'Electroacupuncture in fibromyalgia: results of a controlled trial,' British Medical Journal. 3.5:1249-1252. Wessely et al. (1999)  'Chronic Fatigue and its Syndromes,' p.387.

[16] Awdry, R. (1996) 'Homeopathy and chronic fatigue - the search for proof,' International Journal of Alternative and Complementary Medicine, 14: 12-16.

[17] Fisher, P. et al. (1989) 'Effect of homeopathic treatment on  fibrositis (primary fibromyalgia),' British Medical Journal, 299: 365-6.

[18] Awdry, R. (1996) 'Homeopathy may help M.E.,' International Journal of Alternative & Complementary Medicine, 12-21.

[19] Linde, K. et al., (1997) 'Are the effects of homeopathy placebo effects? A meta-analysis of placebo-controlled trials,' Lancet, 350: 834-43, Commentaries on 824 and 825.

[20] Perrin, R.N. et al. (1998) ' An evaluation of the effectiveness of osteopathic treatment on symptoms associated with myalgic encephalomyelitis: A preliminary report,' Journal of Medical Engineering and Technology, 22: 1-13.

[21] Shepherd, C. (1999) 'Living with M.E.' p.282.

[22] Behan, P.O., et al., (1990), 'Effect of high doses of essential fatty acids on the post-viral fatigue syndrome,' Acta Neurologica Scandinavia, 82, 209-16. 

[23] Journal of the American Medical Association (1997), 278, p.1327-1332.

[24] De Smet, P.A.G.M and Nolen, W.A., (1996) 'St. John's Wort as an antidepressant,' British Medical Journal, 313: 241-2.