Chronic Fatigue Syndrome
(1999)

This bit of Robots.. is not about music, it's about Chronic Fatigue Syndrome, more commonly known as ME and previosuly as "yuppie flu". I'm including it here because I'm constantly surprised by the number of people who, when I tell them I have ME, say that they know someone else who's got it and has no treatment for it. I usually tell them about Cognitive Behavioural Therapy and recommned the Trudie Chalder book (details at the bottom) which have both helped me to begin to recover from the illness over the last year.

The symptoms, for those unfamiliar with ME, I usually liken to having run a marathon the previous day with no training. Essentially, extreme fatigue and tiredness, muscle and joint aches, difficulty concentrating and reasoning and a whole host of other things including difficulty sleeping. You may have noticed that there aren't many live reviews in the zine...now you know why.

Cognitive Behavioural Therapy

This is a summary of the talk I gave at the Cambridge group of the ME Association on 21/7/99. It is intended to be an informal description of my experiences of Cognitive Behavioural Therapy (CBT) over the previous 12 months or so and, as such, should not be regarded as the whole CBT story---for instance, I never needed help on the cognitive side but the therapy has much to offer those who do---but it does relate the practical experience of an ME sufferer, experience which will hopefully be useful to others.

My Story

In the winter of 1996 I was just beginning the final year of a PhD at Cambridge University when I became ill with what felt like an extreme flu without a head-cold. A visit to my GP resulted in my being given some painkillers, told I had a virus and being sent to bed for a few days. Sure enough the virus passed and I felt fine again, but within a couple of weeks the symptoms had returned, albeit mildly. I went back to the doctor who prescribed the same again with the same results, except that when the virus returned again, it was more intense. After several months of this, I asked to be referred somewhere (not knowing what was wrong with me, and having only a passing knowledge of ME, I didn't know where). This resulted in a battery of blood tests being undertaken and, as they all turned up negative (for anaemia, diabetes and so on), I was referred to the local hospital---around 11 months after I first became ill.

Further blood tests were carried out there and I was told that, under a diagnosis by exclusion (i.e. because they were sure I hadn't got any of the conditions they could test for), I had Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome, commonly known as ME. I was told that there was no known cure except for time and adequate rest. They did give me some tricyclic antidepressants for problems I was having sleeping but as these affected me 24 hours a day, I soon stopped taking them. I privately tried several other things though: light-box therapy (as for Seasonal Affective Disorder), St. John's Wort, keeping a food diary and Evening Primrose Oil, but found no success with any of them.

After several months, I progressed through the hospital system to the Psychiatry department where I was introduced to Cognitive Behavioural Therapy (CBT). I was the first person from the Cambridge ME group to get to this point, although many members had been referred to the local hospital and ended up in many different places or nowhere at all. I put this down to several things: first, the hospital had no standard procedure for ME sufferers; second, persistently asking to be made better; third, luck.

Cognitive Behavioural Therapy

CBT is a combination of two therapies: Cognitive Therapy and Behavioural Therapy. The former seems to be a kind of limited psychiatry concerned mostly with positive thinking, and the latter modifies the behaviour of the patient. CBT can be, and has been, used for many illnesses, for example depression, and is not a cure for either them or ME, but instead an illness/lifestyle management regime.

For chronic fatigue, this consists essentially of a way to manage, and over time increase, daily exertion. ME sufferers tend to cycle through good and bad days in which, respectively, they do as much as possible while the "feeling good" persists or very little as the "feeling bad" takes hold. Perversely, each of these contributes to the cause of the other: doing too much on a good day almost always leads to a consequent bad day and the rest on those bad days often results in feeling better on subsequent days. CBT provides a way to flatten out these ups and downs, to replace the curves with a straight line. The way that it does this is provide a daily exertion total which the sufferer should not exceed on good days and should try to reach on bad days (the behavioural element) and to banish negative thoughts like "why me?", "I'm never going to get well" and so on (the cognitive element). Over time, the daily total can be slowly increased.

My experience of CBT

To arrive at an initial daily target, I kept a diary of all exertion, both mental and physical since both can cause great fatigue, dividing it into two classes: Heavy (H) and Light (L) along with Rest (R). Heavy included trying to think about my thesis, walking and so on, Light might be low-level conversation, about the weather, say, and Rest could include watching something trivial on the telly, or lying in a darkened room doing a relaxation tape. After the three weeks were up, I worked out the average amount of H, L and R that I had been managing and this became my daily target. For example, if, over a week, my total hours of H each day had been 2, 3, 1, 4, 1, 1, 2 then my average would be (2+3+1+4+1+1+2)/7 = 14/7 = 2. i.e. 2 hours of H per day would be my target.

Within each day, I tried to spread out the exertion so that periods of rest were sandwiched between periods of effort. How long these periods were depended on the task to be done and how I felt. For example, to spend an hour going round Tescos (H), I might rest for an hour first, but to write a few letters each taking 15 minutes (L), a 5 minute rest between each could be sufficient. There is no need to plan the day in advance, alhough I did find that trying to keep to a similar routine every day helped me to rest often enough while I was trying to work on my thesis, e.g. doing periods of half an hour work and half an hour rest for 2 hours in the morning and afternoons. You do need to keep a diary, however, so that you can keep track of how much exertion you have done and how much you have left for the day. Here is a page from my diary for 20/5/98:


6.30  woke up    
7.00  made coffee, read in bed                    R
7.30  read                                        R
8.00  light box                                   R
8.30  get up, wash, breakfast                     L
9.00  get car out, drive to hospital  (20 mins)   H
9.45  walk from car park to psychiatry (10 mins)  H
10.00 see consultant                             H/L
11.00 walk to car, drive home                     H
11.30 sit down                                    R
12.00 eat dinner                                  R
12.30 watch video                                 R
1.30  add hospital visit to this list             L
      light box
2.00  shave                                       L
2.00  work on thesis, with breaks                H/L
3.30  rest (not sleep)                            R
6.00  write letter                                L
6.30  eat tea                                     L
7.00  ME meeting                                 H/L
8.30  sit down                                    R
9.30  bed                                         R

Totals (roughly):  L: 4, H: 3

As you can see, this is not a typical day as I had to go to the hospital and to an ME group meeting. It does show, however, that I managed my rest so as to have energy for both those things. In the morning before going to the hospital I spent time reading in bed and when I got back I spent a lot of time resting before going out in the evening. CBT allows you to "save" your energy in this way, over the course of a day, so that, for instance, you could do nothing all day in order to go out in the evening. I found that doing this occasionally was fine but still made me feel worse on following days.

After 2 or 3 weeks of doing the CBT, if the daily targets are being met consistently then they can be increased. If they are being missed by a long way, then they can be reduced, or stay the same until such time as they are being met consistently. The increments might only be 5 extra minutes a day, or swapping 10 minutes of L for 10 minutes of H, but when I did increase, it felt like real progress.

The therapy was initially conducted under guidance from the hospital but, once grasped, the idea is that the patient administers it to themselves. This is even true, to some extent, of the cognitive side of CBT but, as I said earlier, I never had any problems with motivation or negative thoughts and so can't really comment on that.

Advantages and Disadvantages of CBT

I found that there are many advantages of CBT and one disadvantage, or perhaps difficulty. The advantages include:

  • there are no drugs
  • it is easy to do and you can manage it yourself
  • it is flexible
  • it allows you to see where your time really goes
  • you have numbers (the hours of H and L that you achieve) which give you some objective measure of your progress
  • you actually do more---if you have a target of 4 hours of H and have already done 3.55, then you are inclined to find something to do to fill the 5 minutes whereas previously you would have just stayed lying on the settee
  • you learn to break tasks down into manageable chunks (such as first making a note whenever an idea popped into my head for a few days, then sitting down to write a brief set of notes for the talk I gave over a couple of evenings, then spending several days writing and typing this report)
  • a lot of the guilt that goes with having to leave jobs undone is removed. When I was ill and not doing CBT I would find that towards the end of the day when I was really tired, I would start to feel guilty about not doing enough work on my thesis. Now, when I've done what I can, or what I'm allowed, then I don't feel guilt because the CBT says that I shouldn't do any more work.

The one disadvantage of CBT is that it requires determination and some discipline to keep a daily diary and stick to the exertion targets. Make no mistake, it can be difficult on some days, especially so on those days when you wake up and know that you're suddenly, and inexplicably, completely recovered and can do everything you used to be able to do. Likewise, you may have to force yourself to do a little bit more when you'd really like not to. The advantages of both of these things, though, will become apparent when you start to find that you have a more consistent level of energy, that because you didn't go mad and swim 50 laps of the local swimming pool the other day, you can do a bit of gardening today and because you did the extra 5 minutes a few days running, you've managed to get that letter to Granny finished and now have 15 minutes to spend on yourself.

Conclusions

When I started CBT, I was doing around 3 hours of H, 4 hours of L and 8 hours of R. This may sound a lot but is nothing compared to a person who does a 9-5 job and, when you start to keep a diary and see how much energy you actually fritter away yourself, seems quite reasonable. After doing it for just over 12 months, I am now well enough to be working part-time, have nearly finished my thesis, have been discharged from the hospital and no longer keep a daily diary, just an occasional one (although I do stick to a fairly standard routine each day). I am not cured or recovered---I am still tired all the time, still cannot think deeply without a great amount of effort, still in pain and still lose concentration---but I feel very much like I'm heading in the right direction and that this is due in no small part to the environment created by doing CBT.

To me, CBT seems like a formalisation of a simple and reasonable idea, one that many sufferers have probably had, about trying to manage the illness. It doesn't require belief in any mysticisms or ancient, or even modern, medicines, is drug-free (but can be done in conjunction with other treatments) and is completely independent of the cause of the fatigue. It is not, nor does it claim to be, a cure but it gives an improvement in quality of life, a crutch to lean on and, above all, gives you back some time (5 minutes a day is 30 minutes a week, 2 hours a month...) and in the absence of a cure, I'll settle for that.

References

"Coping with Chronic Fatigue" by Trudie Chalder (Sheldon Press)--A cheap and practical guide to CBT.

ME Association, 4 Corringham Road, Stanford-le-Hope, Essex, SS17 0AH phone: 01375 642466, fax: 01375 360256

Other People's Stories

  • Simon of Pink Hedgehog Records
  • Lucy of The Satellite fanzine
Feel free to email me your experience of CFS/ME and CBT or any other treatments.


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