Managing and Treating Chronic Fatigue Syndrome CFS/M.E

There is no ‘Magic Pill’ that effectively treats Chronic Fatigue Syndrome (CFS), Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis (ME), Post Viral Fatigue Syndrome (PVFS), Post Traumatic Stress Disorder (PTSD) or Fibromyalgia. In fact, there isn’t even a sure-fire diagnosis. The diagnosis is one of exclusion, meaning that it is given only after all other possibilities for the symptoms described have been eliminated. For simplicity, we use here the term CFS.

Conventional medical interventions

The conventional treatment and management of CFS in the UK is based on the National Institute For Health And Clinical Excellence (N.I.C.E) guidelines, and basically consists of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). These treatments are structured as follows -

Cognitive Behavioural Therapy (CBT)

CBT is a psychological approach, designed to support patients through a variety of chronic illnesses. Its objective is to eradicate any negative beliefs, dysfunctional thinking and emotional responses caused by the stress and anxiety associated with long periods of being unwell. The hope is that, over time, the patient will come to recognise these negative feelings, enabling them to be addressed and controlled. It is claimed that CBT might also help with practical issues such as -

Graded Exercise Therapy (GET)

GET is a programme that starts and continues with activity at what is perceived to be a manageable pace for the particular individual. Its aim is to gradually increase the strength and fitness of patients taking into account their goals and exercise tolerance by gradually increasing activity levels over a period.

We find, however, that whilst some CFS sufferers say they find GET beneficial, many others encounter setbacks and relapses and feel that this programme is detrimental, causing more harm than good.

We have regular active discussions on pacing techniques – a gentler alternative to GET - on our forum, and Roger, one of our Forum Moderators, has written an article on pacing which I would like to share with you -

There’s a lot of confusion surrounding the term ‘pacing’, so below is my take on what ‘perfect pacing’ really means.

First it’s perhaps a good idea to look at two other approaches that, on the face of it, might seem very similar if not the same as pacing but are not – Graded Exercise Therapy (GET) and ‘balancing’ activity and rest.

GET seems like a good idea until you try it – in my experience it’s very often quite detrimental to most CFSers. I think the reason for this is that the therapists, trained under N.I.C.E. guidelines, seem to think that CFS is in some way related to fitness, and that a steady, gradual increase in activity will therefore be beneficial. But as anyone who has CFS will know, it’s NOTHING to do with fitness though we of course become unfit because we are unable to partake in much activity. It’s also centred on goal setting and, IMHO, it’s not reasonable to expect genuinely very sick people to attempt the setting of short term, often unobtainable goals.

‘Balancing’ activity and rest via fixed periods of both is clearly stupid because it implies that we are always in the same physical state, which we’re not.

Pacing, on the other hand, is about giving the body whatever rest it needs by, as far as humanly possible, avoiding all symptoms.

So why does the body need this rest? Good question – although there are several theories, nobody currently knows for sure what sets CFS off, but the ‘why’ doesn’t matter for the purpose of this thread. The fact is that whatever the cause, the bottom line is that the body has been under attack resulting in several of its systems going awry. It lets us know that this is the case by producing a whole host of unpleasant symptoms – which ones the individual gets depends on which bodily systems are affected and to what extent. But those symptoms, whatever they happen to be, are the body’s way of saying, ‘Hold back, I can’t handle this and I need an operating level that I CAN handle. But I need rest – NOW!’

My belief is that given enough time – and the time needed is very often a lot – the body can sort itself out if all stressors, be they physical, mental or emotional, are removed. Each of our individual bodies know what they can and cannot handle, and if we listen to them carefully, they’ll tell us, and that’s where pacing comes in – helping the body to repair itself.

The key to success, I believe, is to let the body tell us what’s needed rather than us telling it, as is the case with GET & balancing activity/rest.

So, to the methodology – conceptually, it’s very simple, but in practice it’s a bit tricky and can often require a fair amount of trial and error because the need is to find the point at which each particular activity (physical, mental and emotional) brings on symptoms, and then stop the activity just BEFORE that point. So, if, for example, you can polish furniture for twenty minutes before symptom onset, you stop at, say, eighteen minutes. To establish these points for all your activities is a pain, but, sadly, it’s necessary to achieve perfect pacing.

When you have been consistently well for a reasonable time via this approach – say, a month – you can try upping your game, but very gradually, aiming at all times to avoid symptoms.

Eventually, and it DOES take time, you’ll hopefully reach a point at which you can maintain reasonably normal activity consistently without symptoms. Then you have to be careful to avoid the following trap that I fell into.

When you reach consistent ‘wellness’, you may well get over enthusiastic and exceed your limits, but the resultant symptoms are likely to be much less severe than previously and will tend to resolve with just a short rest period rather than the several days previously needed. This tends to make you cocky, treating these minor symptoms as a mere inconvenience.

The problem here is that your body gets fed up with being ignored and eventually reacts by creating a BIG CFS rebound, possible setting you back several months. So, take these minor symptoms very seriously and, from a rest point of view, treat them as though they were major ones.

Someone who seemed to know what he was talking about recently told me that when you’re at this stage, there are likely to be ‘signs’ - sensations like a slight tingling or very mild muscle pain - if you’re approaching your limit, and that these signs/sensations shouldn’t be ignored because they’re precursors to symptoms and should, therefore, be treated in the same way that actual symptoms are treated. If you can establish what these ‘signs’ are in your particular case, you can hopefully avoid the actual symptoms.

This post is too long, so just a quick point on ‘rest’. Watching TV, listening to the radio and reading a book/newspaper etc are activities, NOT rest. Rest is lying down, possibly listening to meditative music or a relaxation CD, until you feel well. The objective of rest is TOTAL relaxation of body, mind and emotions – no guilt allowed!

Finally, the CFSers I have most sympathy with and admiration for are those with unavoidable commitments like young children to care for or an essential job. Clearly, PERFECT pacing just isn’t going to be possible for them and I’m afraid I can only suggest that they consider ALL their activities and delete from their lives any that aren’t ABSOLUTELY essential. Hopefully, there’ll come a time when those commitments come to an end or at least ease off, and serious pacing can start. In the meantime, just do the best you can – ANY pacing is better than none.

For everyone else, done properly, pacing is tedious, seemingly stealing your life, and it takes a long time to produce the results you’re looking for. But it DOES produce those results in the end, and I know of nothing else that does.

Activity

A worthwhile approach is to keep an activity diary that documents what activity you did on any given day and how you felt afterwards. This establishes a symptom trigger pattern for your better days and your not so good days. To complement this, to also document any periods spent resting is good. This may of course be inconvenient due to periods of feeling unwell or the need to care for family etc, but if it is possible, it allows you to recognise any factors that you found detrimental to your wellbeing then perhaps eliminate them as far as possible in the future until you’ve built up your strength, at which point you can try gradually reintroducing them.

It is a must to prioritise your activities - if something can be left, Leave It! Consider – what’s more important, a dust-free house or your health?

Whatever your activity levels, it’s advisable to vary what you do and include things that you WANT to do as well as things you think SHOULD be done. This way, you vary the muscles you’re using so that you don’t put too much stress on any one part of your body. Also, try not to concentrate your mind on what you HAVEN’T done, as doing so becomes overwhelming and stressful.

Many CFS sufferers fall into the ‘Boom and Bust Cycle’ trap. On their better days they tend to busily cram in everything that they want to do or feel they need to do (Boom), only to find that during the next few days their energy levels have collapsed and their symptoms have worsened (BUST). To eradicate this ‘Boom and Bust Cycle’ always aim for a balance between work, general activity and rest, even on what you would call a "good day".

Diet and Nutrition

This section is contributed by Sleepyhead, our longest established Forum Moderator.

We all know the importance of a good, well balanced diet, particularly when suffering from or recovering from illness. But what most people are not aware of is that many CFS sufferers have extreme difficulty in preparing a full, wholesome meal, often relying instead on ready meals and processed foods, which are clearly not ideal.

Of course, in an ideal world, we would grow our own vegetables and eat free range eggs and meat etc. But, certainly for CFS sufferers, this isn’t an ideal world and such an option isn’t an option at all, so we have to do a little thinking outside of the box.

Regarding getting ingredients together, shopping consumes huge amounts of energy for CFS sufferers, but this energy drain can be all but eliminated by using a supermarket delivery service. This is well worth doing.

Tackling day-to-day cooking is sometimes perceived by CFS/ME sufferers as yet another mountain to climb, another hurdle to be negotiated. So some help is needed.

One option is to ask close friends or family if they could make a few extra portions - which you’d be happy to pay for - when cooking a meal. These can then be frozen for later use. This may seem cheeky, but we find that close friends and family of CFS sufferers are usually more than willing to help in any way they can. In fact, responding positively to such requests can make them feel useful, as though there really is something they can do to help at last.

Another possibility exists if you own - or can beg, borrow or steal - a good blender. With this, it’s very easy and non-taxing to make nutritious soups and smoothies, full of ‘true food’ vitamins, enzymes and minerals.

But however hard they try to eat well, CFS sufferers are often deplete in minerals, vitamins, enzymes and antioxidants, due mainly to poor nutrient absorbency. One example that is classic in CFS is Vitamin D deficiency, due to long periods spent indoors with the resultant lack of sunshine – as almost all of the body’s systems require vitamin D to function correctly, this illustrates the importance of tackling deficiencies. However, other than perhaps a good quality multi-vitamin/mineral supplement, it’s not a good idea to start a supplement regime based on what you THINK might be required. Rather, it’s best to consult a skilled practitioner with a wide experience of CFS and supplementation along with accessibility to appropriate tests.

Complementary Therapies/Alternative Therapies

Although many complementary/alternative therapies have been in use for centuries, there is little or no current research that demonstrates the efficacy of these treatments in respect of CFS symptoms. However, many sufferers have reported a feeling of wellbeing when engaging in these treatments, but much depends on the skill and experience of the therapist. For this reason, it’s important to thoroughly check the therapist’s credentials.

You might want to investigate the following therapy options -

Despite an ever increasing demand for such therapies to be included within the NHS, your GP is very unlikely to prescribe complementary medicine as most Primary Care Trusts do not have the necessary funding, or the inclination. However, having been part of the NHS for many years, Homoeopathy is a possible exception, assuming adequate funding and inclination. There are currently five NHS Homeopathic Hospitals - Glasgow, The Royal London, Liverpool, Bristol and Tunbridge Wells.

There are a few organisations, such as The Lightning Process, The Perrin Technique and the Gupta Programme, that claim possible CFS cure via a psychological approach. We have very mixed reports from forum members and would, therefore, advise anyone seriously considering such organisations to research via the internet, where they’ll find some positive reports but many negative ones.

If you wish to try any of the many forms of complementary therapy, be careful. Use one at a time and keep in mind that there is still no ‘magic pill’ for treatment of CFS.

SO PLEASE AVOID ANY THERAPIST CLAIMING TO HAVE ONE!