Recovery from CFS: A Book Review

Thanks to Ellen for her expertise!

Barton, A (ed.). Recovery from CFS. 50 personal stories. Milton Keynes: AuthorHouse. Pb. 2008. 349 Pp. Also available as pdf. http://www.alexbarton.co.uk/cfsrecovery-stories.htm  Price varies (based on exchange rate and whether one buys book or pdf).

Let me begin this review by declaring a number of conflicts of interest. Firstly, I have ME. I know what it is and how it differs from the dustbin diagnosis known as CFS. Furthermore, despite trying various treatments, I belong to the 25% who have been ill for more than ten years and have failed to make significant improvements. So in a sense, experience has made me a sceptic. Secondly, I am a psychologist. I therefore know about stress, a common cause of chronic fatigue, and I know about hope, the illusion of control and the placebo response. Thirdly, I am a specialist and researcher. I know how easy it is to count symptoms and diagnose someone with CFS. I’m also aware from the research that few well-defined cases of CFS make a complete recovery (perhaps only 6%), but that a large number will improve over time, regardless of what one does. Given my background, I wanted the answers to two questions in particular. First, did everyone have ME as Ramsay described it and second, did everyone make a complete recovery?

The answer to the first question is no. Many of the descriptions of the illness are limited but I estimate that about 10 of the contributors probably had ME or post viral fatigue. The others included people with fatigue triggered by stress/poor diet and a condition which we used to refer to as ‘nervous breakdown’. They have the telltale symptoms of feeling exhausted all the time, the aches and pains and myriad of other symptoms. They admit to having been busy and/or stressed, then succumbed to every bug, eventually spending virtually all day in bed. Their stories do not describe the diurnal variability, the odd symptoms such as fasciculations and the loss of fine motor control. It took a complete collapse before they began to listen to their body, eat healthily and learn how to reduce stress. One case was typical. A man described a life of stress, living on adrenalin, depression and bulimia and recovered after finding love. When the relationship ended and the symptoms recurred, massage, mediation, CBT, avoiding sugar (always helpful) and Mickel Therapy helped him back to normal. He ended his story by commenting that ‘healing is a choice’. What a pity he had to become so ill before he realised that it’s important to avoid stress and junk food. Other patients described thyroid problems (which can explain the symptoms and therefore should not have resulted in a diagnosis of CFS), sensitivities, hypoglycaemia (also easily remedied), and glandular fever. However, most reported the triad of stress, poor nutrition and a failure to listen to their body’s warnings.

What helped speed their recovery included pacing, identifying sensitivities and avoiding the foods concerned, learning to deal with stress e.g. using meditation, counselling, CBT, the Lightning Process, Reverse or Mickel Therapy, supplements, the blood group diet, more organic food and surprisingly, Dr. David Smith’s highly restrictive regime of pacing, anti-depressants and after stabilisation, graded activity. For some, this programme meant no TV for months, and isolation and depression. I personally know of interventions which don’t require you to tolerate hours of boredom and take less than five years to show a real effect, but I was pleased that the individuals recovered in the end. Less commonly mentioned strategies included yoga, finding God and prayer.

In short, this book is more about CFS than ME. And it’s about dealing with unhealthy lifestyles, brought to an abrupt end by a bout of flu. Not surprisingly, the recovered patients often blame themselves for their illness. One noted that "95% of all chronic illness is caused by internal stress (toxic emotions). It is scientific fact". No, it isn’t. This is an example of the illusion of control. It helps to reassure the worried well that they are not vulnerable to the diseases they are afraid of.

A lady who was a champion canoeist appeared from her description to have become ill after overtraining, but also revealed distress, possibly linked to a perfectionist personality. Reverse Therapy resolved her problems and now she is back racing. Obviously ignorant of the evidence of viral infection and the epidemics, and unfamiliar with the posts on One Click and MEActionUK, she claimed that a "common trigger for many people is the non-expression of emotion". You can probably imagine my reaction to that nugget of wisdom.

One contributor who did have ME is Dr. Clare Fleming. Was she indeed one of the 6% who make a complete recovery? The four pages do not make it clear. Yes, she has full health. No, she hasn’t returned to her previous life. How did she ‘recover’? Sensible diet, stress avoidance, pacing, faith and prayer. It’s what I do (or try to do), but alas, it hasn’t worked for me. However, it shows again that pacing is helpful and that people with ME can make significant improvements, with a multidimensional approach and luck.

The second question I asked myself was how many reported a complete recovery. The answer to that is almost everyone. This offers hope, even for those who were once perfectly well and were struck down by a bug from which we never recovered. Too often, ME and CFS are described in ways which give the impression that almost everyone is likely to be ill for the rest of their lives. And I know that just isn’t true. However, let me be very clear. There is nothing in the book about ME as described by Ramsay. The illness characterised by muscle fatiguability following minimal exertion and the delayed recovery of muscle strength. The disease with the blurred vision, balance problems, loss of fine motor control and intolerance to alcohol. The condition which fluctuates from hour to hour and day to day. For those of us with ME as opposed to CFS, the book is therefore more of academic interest, so we can update ourselves about what is available and what, if anything, we could change or try.

Wearing my specialist’s hat, the main message of the book is to underline the complete uselessness of the CDC criteria for CFS. How many of the doctors diagnosed their patients by checking for the presence of five (common) symptoms? I would not have diagnosed CFS or ME if a patient reported stomach ache after eating. Why waste time and leave the patient to discover a sensitivity to foods? The first thing I ask my patients is to provide me with a list of symptoms, noting what appears to trigger them and what relieves them. When I saw that one patient was tired all the time and only had mild gastrointestinal problems, I referred her straight back with the advice to look for something else. She was later diagnosed with Coeliac’s disease.

Naturally, not everyone takes kindly to those of us who are sceptic about the Lightning Process or Mickel/Reverse therapy. One ex-patient was quite typical in her response. The doctor had "confirmed" that she had ME. As we have no objective test for the illness, I wonder how they were able to confirm the diagnosis? As for CFS, isn’t it a diagnosis of exclusion?

Overall, I think that all groups should buy a copy of this book for their library. From my work as an archivist, I get the impression that the population with CFS/ME is currently dominated by individuals who tried to have it all and who collapsed with a virus under the strain. This will provide them with useful information about the therapeutic options available. However, I suggest that they also include a copy of this review to provide some balance.

Ellen M. Goudsmit PhD CPsychol AFBPsS

* * *

Ellen hits on the big problem – that many people who say "CFS" are talking only about the symptom of "chronic fatigue" and do not mean the post-viral condition more properly called Myalgic Encephalomyelitis.

I believe it was Mark Twain who said "there’s a big difference between lightning and lightning bug", and here, too, there’s a big difference between similar words. If exercise or anti-depressants help, then you don’t have what I have, because both make me sicker. You may have "chronic fatigue", but you do not have Chronic Fatigue Syndrome.

Unfortunately, too many doctors are unaware of the difference.

I’ve also known people who were originally diagnosed with CFS and now tout a gluten-free diet as the cure for CFS. No, a gluten-free diet is the cure for celiac disease, which their doctor misdiagnosed as CFS because he didn’t do all the right tests to make the correct diagnosis.

The biggest diagnostic error that I see in support group is people who come in with a new diagnosis of Something Else and CFS. Under the original diagnostic criteria, that was impossible: the Something Else had to be under control, so that it could no longer be a potential cause of the fatigue, before CFS could be diagnosed. There have always been doctors who were unaware of that requirement, and the new criteria don’t make it clear that CFS is diagnosed by excluding any other possible cause for the fatigue. Originally, you could not get a CFS diagnosis if you’d ever had depression before; then it became not if you’d had depression in the past 5 years; then they started loading up the research with patients who had current depression, in order to prove the false theory that CFS=depression. They couldn’t prove it with real CFS patients,only about half of whom ever develop depression (as a result of the limitations imposed by their disease, just as cancer patients may have concomitant depression as a result of their pain and symptoms), or, conversely, about half of CFS patients never have depression; so, instead of proving that CFS is depression, they set out to prove what is already known, that depression can cause people to feel fatigued, and that depression-related fatigue is aided by exercise and anti-depressants, and, through illogic, to then claim that "chronic fatigue" is the same thing as post-viral Chronic Fatigue Syndrome (previously known as Myalgic Encephalomyelitis).

As far as recovery from CFS, for 12 years after diagnosis, I was a success story: I was back to work full-time. None of my co-workers saw what it took for me to appear normal at work, the many times that I spent every non-working hour resting in order to continue working. So, I know that it is possible to recover from CFS to the extent that you can return to work.

And now I’m one of the failures, too disabled to work even half-time for going on 9 years. When the doctor told me in 1988 that I should only work part-time, financially that was not an option. Maybe if I had a rich husband or a trust fund and could have cut back my hours, I would not have worn myself down to the point that I relapsed. However, some of the blame for remaining in relapse this long has to fall on the doctors, who were told from the first appointment what my prior specialist recommended, and nonetheless insisted on treating me as a depressed divorcee instead of a CFS patient who needed immune system support.

It took years to get the pills that I requested at my first appointment in 2000, and Dr. Murphree tells me that it takes at least one year of recuperation to undo each year of deterioration. A local specialist tells me that I was allowed to deteriorate too far, and therefore will never recuperate fully because too much physical damage occurred while I was being treated as a whiny depressive instead of a neuroimmune patient who was much better off being divorced.

So, yes, as Ellen says, there is hope for CFS patients, but it’s got to be accompanied by competent doctoring. If you’re only sleeping 2 hours a night, your body is not going to have the resources to heal itself. I didn’t start to improve till I got an effective sleeping pill that allowed my immune system to recharge and start to overpower the virus again.

Even if the doctors are right that I will never return to full-time work, I did have an additional decade of contributing to a pension plan and saving independently, for which I’m grateful. I was able to buy a house in that time, so I won’t have to worry about paying rent in my old age, which would have been a real concern if I’d been forced into retirement when I got sick at age 28 and my rent was essentially equal to what I’d get from Disability.

More importantly, that additional time allowed the internet to develop; I could not have done what I do back then, because there would have been no way for me to get the work and return it without paying a healthy person to courier it across town, a charge that would exceed what I am paid myself on many jobs. Theoretically, when I reach full recovery, I should be self-supporting again and can refuse future Disability benefits.