After a few days the fever lifted, but I still felt tired and weak and had no appetite, so I assumed it would just take a few more days for my body to recover.
After about a week of this and still no sign of recovery and having to spend most of the day lying on the sofa, I went to see the doctor. I was just told the usual “it’s a virus, it can take up to 10 days to recover” line. I accepted this, although it seemed a bit strange that I had virtually no appetite even though I didn’t have a fever any more. It certainly didn’t seem like any flu I had had before. I was also mildly depressed for no apparent reason, which I assumed must have been another symptom.
During this period I usually didn’t feel like eating anything until lunchtime, when I could manage soup and a piece of toast. I would then feel dead for most of the rest of the day until late afternoon, when I usually had more energy and could manage to eat a normal meal. But I found that if I ate too much at night I would have difficulty sleeping, and I would end up awake for most of the night while my body struggled to digest the meal. When this happened I would feel very weak again the next day.
About 2 weeks after the initial flu infection I started to feel gradually better, but I discovered that if I tried to do too much I would regret it the next day. One day I woke up feeling energetic and decided to go for a run around the local park. The next day I woke up feeling barely alive, and had to spend most of the day lying on the sofa again.
I assumed that I just needed to give my body time to recover, so I tried not to push my body too much until it was fully recovered.
About 3 or 4 weeks after the initial infection, I was feeling well enough to go back to work again. After a few weeks, this resulted in a setback, with me feeling very weak and lacking in appetite for most of the time. I also started developing new symptoms such as hypersensitivity to noise, vertigo, and occasional irregular heartbeats.
I arranged another doctor’s appointment to figure out what was wrong with me. Post-viral fatigue was mentioned, and I was told that most people eventually recover. The doctor asked about my lifestyle – was I getting enough exercise, and did I have a good diet, both of which I thought were fine. The doctor also asked about my job – was it too stressful, or was I worried about lack of money if I took time off sick? I pointed out that I had got sick after 2 weeks of holiday, that my job wasn’t particularly stressful, and that I had enough money in the bank to go for a year or two without working.
For the next three months my illness kept relapsing and remitting. I would usually go about a week or two feeling mostly okay, then for another week or so I would feel terrible. I would usually have to take a day or two off work during the relapses, and would then return to work.
As I continued to work, things started to get worse. I would take a few days off work, then return when I felt better. But instead of feeling okay for a week or two, I could now only manage a day or two back at work before the symptoms came back. I was now suffering from chronic insomnia and severe depression and anxiety during my bad periods – I had nothing on my mind and didn’t have any reason to feel depressed, so I assumed they were symptoms.
I also seemed to have a desynchronised body clock – sometimes feeling wide awake during the night, and sleepy during the day. When this happened I would feel really tired and weak the next day and the depression would be a lot worse. One day after not being able to sleep all night (for no apparent reason), I had acute depression the next day (9.5 on a scale of 1 to 10), followed by intense anxiety, followed by depression again, then anxiety in roughly one-hour cycles. The problem was clearly something in my brain – lack of neurotransmitters or a messed-up body clock – but it was confusing and frightening because I didn’t know what was causing it or how to cure it.
My doctor kept saying it was my lifestyle/job that was causing the problems, although I didn’t see how that could be the case because my job wasn’t very stressful. I pointed out to the doctor that my problem appeared to be a lack of stress tolerance rather than too much stress, but this distinction didn’t seem significant to her.
Leaving my job
Because my symptoms always improved when I took time off, I eventually decided to give up my contract job. Another person working with me told me that his wife had had a similar illness. She had kept taking sick days and going back to work again, and eventually she had developed ME and now couldn’t work. I didn’t want to end up in the same situation, so I decided that the best course of action would be to take a long break and let my body fully recover. The fact that I had depression was also a critical factor: the physical symptoms I could have coped with and dragged myself into work most days, but the depression was so severe that it forced me to actually do something about my situation, as I simply couldn’t continue any longer.
Recovery
After leaving my job I recovered quickly, and after a month or so I was feeling pretty much normal again. I also made other changes to my life, such as moving away from London and moving in with my girlfriend, as well as spending more time working on my own projects and building up my own business. I was able to live a normal life and eventually (after about 6 months) went back to working on contract jobs again, but taking things sensibly and not wearing myself out.
Things went well until 2001 when I had a bad relapse in March, and another one in July. During the second relapse I went to see another doctor. The worst of my symptoms at this time were lack of appetite, diarrhea and insomnia, along with the fatigue. I asked the doctor if I could have a food allergy, as I seemed to have diarrhea after eating certain foods, but she ruled this out and diagnosed irritable bowel syndrome. I did go to an alternative therapist who used an “ALCAT” test to diagnose various food allergies, although I later discovered that the ALCAT test is really just an expensive pseudoscientific scam.
I mentioned to the doctor that I had been trying to make my life as stress-free as possible, but I was still having symptoms. She pointed out that “some people need some stress” in their lives to feel normal. At the time this seemed a pretty stupid thing to say. But it stuck in my mind, and only later did I realise the significance.
Stress Tolerance
I was now spending a lot of time doing research into CFS, IBS, stress, burnout and related areas such as the circadian body clock. All of these areas seemed to be involved in the illness, but I didn’t know how they all fitted together.
An important part seemed to be stress and stress tolerance. CFS seemed to be caused by an inability to handle stress rather than simply too much stress. Hans Selye pioneered stress research during the first half of the 20th century when he mapped out the body’s response to stress. According to Selye there are 3 stages to the stress response:
- The alarm stage, when the adrenal glands discharge all of their stored stress hormones into the blood.
- The resistance stage, when the adrenal glands increase in size in order to maintain a high output of stress hormones.
- The stage of exhaustion, which eventually comes after continued stress and results in symptoms similar to the alarm phase. During this phase the adrenal glands shrink and levels of cortisol fall, resulting in an inability to cope with stress.
CFS seemed to equate to Selye’s exhaustion stage, but that still didn’t explain why people with CFS remain sick even when not under stress, and whether there was any way of fully recovering.
Putting the pieces together
It wasn’t until January 2002 that I finally put all of the pieces together and realised what had caused my illness. The key was realising that my initial illness and subsequent relapses had all happened during times when I didn’t have any work to do, usually after a period of stress, combined with various minor emotional stresses. The illness seemed to be caused by a combination of stress and lack of motivation and goals, and simply reducing stress alone did not result in recovery. What did seem to help was having motivating, enjoyable activities.
Many people have reported that they initially contract the illness when they have excessive responsibilities, or when they have multiple work and personal stressors from which there appears to be no way out. In my case I had been working on a full-time and part-time contract job as well as working on my own business. At the time I got ill I had just reduced my workload a lot, but I wasn’t particularly motivated by my full-time work. I also had a number of what seemed like minor interpersonal emotional issues, which caused a lot of pent-up anger and frustration; these included living with someone I didn’t like, and having a stressful commute.
None of these factors alone was particularly significant, and I didn’t have any major psychiatric issues (a psychiatrist would presumably have given me a clean bill of health). I think it was the combination of a number of stressors, together with a lack of goals and motivation and a feeling that there was no way out, that caused the illness.
After developing CFS, simply removing the stresses wasn’t enough to recover – the illness seems to put the brain into a state that is difficult to break out of, and a positive effort seems to be required to fully recover.
Recovery
Since realising the factors that caused my illness and what keeps me healthy, I have been completely free of symptoms for over 15 years now, living a normal life. Although it might sound strange, the illness has actually improved my life and I am now much healthier and happier than I ever was before my illness.
CFS and depression seem to be the body’s way of telling you to change your lifestyle – the longer you try to avoid the message, the worse it will get. In my case I made significant changes relatively quickly, so I found it easier to recover than some other people I have spoken to.
The irony is that you need to be ill for 6 months to get a diagnosis of CFS or ME – but by that time you are much less likely to recover. Certainly, people have recovered after 4 or 5 years of illness, but it is much more difficult than recovering after a few months. If I could give one piece of advice to anyone who thinks they may be developing CFS/ME it would be to make significant changes to your lifestyle at the earliest possible opportunity. It may be difficult, but you’ll appreciate it in the long-run!
Science of CFS/ME
Research shows that CFS patients are more likely to have had a stressful life event in the three months prior to illness. Doctor David G Smith, a former medical advisor to the ME association in the UK, reports that many patients have multiple emotional or work-related stresses in the period prior to illness. Other patients seem to have their CFS triggered by Epstein-Barr virus or Q-fever. Viral infections and Q-fever activate the HPA axis (the body’s stress system) in a similar way to a psychological stressor.
Research into burnout by Jens Pruessner and others has shown that burnout is very similar to CFS. Burnout is a psychological condition caused by excessive stress and factors such as lack of control and lack of motivation in a job, but it also has physiological symptoms. Symptoms differ between patients, but commonly include fatigue, muscle pain, depression, anxiety, headaches, pain, gastrointestinal symptoms, impaired immunity, and susceptibility to viral infections.
Burnout tends to affect teachers and healthcare workers more than others. In research by Pruessner and colleagues, teachers suffering from burnout were found to have abnormally low levels of the stress hormone cortisol in their blood, whereas those suffering from excessive stress on the other hand had high levels of cortisol. This seems to indicate that stress and burnout are separate variables, and that burnout can exist in the absence of stress.
Pruessner also found that the teachers scoring the highest on the Maslach Burnout inventory (a questionnaire which evaluates burnout) had the highest number of physical symptoms whether or not they were under stress. The most physical symptoms were from those teachers who scored high on the burnout scale and who were under high levels of stress.
Multiple studies have shown that CFS and burnout patients tend to have an abnormally low release of stress hormones in response to stress, and this is also seen in PTSD, chronic pelvic pain syndrome and childhood abuse. This seems to be due to the brain deliberately signalling the body to reduce stress hormones, perhaps as a protection mechanism to protect the body from the effects of chronic negative stress.
While many patients have an acute viral illness at the onset of CFS, no single infection has been found in all patients, and there are many patients who have no ongoing infections. There are two likely explanations for this. One possibility is that the viral illnesses seen in CFS patients are simply a consequence of their reduced immunity to infection. Another possibility is that the initial viral infection is an additional stressor which, when combined with other stressors, results in CFS.
The body’s reaction to any type of stress – whether psychological, physical or due to an infection – is very similar: activation of the HPA axis, resulting in high levels of cortisol being released into the blood. In some cases the extra viral infection at a time of psycho-social stress may be enough to trigger CFS.
There does not need to be any actual emotional or psychological dysfunction to cause CFS. In the case of “over-training syndrome”, athletes who train too hard for too long with insufficient recovery time can develop a CFS-like illness that results in immune dysfunction, chronic fatigue, depression, muscle pain and other symptoms. Other psycho-social stressors can combine with the over-training to result in the syndrome, but in many cases it is simply over-doing it that results in the illness.
Prof Tim Noakes has studied central fatigue, and he believes there is a part of the brain (which he terms the “central governor”) which is responsible for integrating various psychological and physiological factors – such as rate of heat accumulation, sleep status, emotional status, etc. – in order to determine when to create the sensation of fatigue. The parts of the brain responsible for this are part of the limbic system, which deals with emotions, and therefore fatigue can be thought of as an emotion. So although CFS isn’t necessarily caused by “being emotional”, that can be an end-result of the illness (as well as depression).
Infections can cause similar emotional responses: the cytokines released during infection cause the brain to generate so-called “sickness behaviour”, resulting in lethargy and depression.
Research suggests that two parts of the brain might be central to CFS: the “central governor” (insular cortex, anterior cingulate cortex and other regions) and the pre-frontal cortex. The hypothalamus (which is controlled by those brain areas) also seems to be important in generating many of the symptoms of CFS. Most of the symptoms of CFS are related to the central nervous system, immune system and the hormone system, all of which are controlled or significantly influenced by the hypothalamus.
The hypothalamus is the “master controller” of the body, and it regulates all of the body’s automatic functions. In CFS the hypothalamus doesn’t function properly, resulting in impaired immunity, poor digestion, dizziness, nausea and similar symptoms. Some symptoms – fatigue, depression and anxiety – may be directly generated in the brain itself. The central governor, for example, has direct connections to the motor cortex, which can result in fatigue, weakness and paralysis, and this has been shown in brain imaging experiments with athletes and hypnosis subjects.
The pre-frontal cortex is one of the “higher” brain areas which is involved in motivation and long-term planning. It also happens to be an important regulator of the hypothalamus and the HPA axis. Brain scans of CFS patients have shown that the pre-frontal cortex tends to be abnormally under-activated (along with a number of other brain areas). The pre-frontal cortex has also been implicated in depression and stress.
The balance of evidence seems to show that CFS may be a state of persistent burnout, caused by multiple negative life events and stressors. This state remains even after the initial stressors have been removed. CFS may be a protection method built into the brain, which prevents the body from undergoing stresses that are not perceived as being beneficial in the long-term.
Concluding Comments
The most important thing to remember is that people can and do make full recoveries from chronic, severe CFS/ME, and are able to live full and normal lives afterwards. Although my own CFS was moderate, I have spoken to people with severe CFS, some of whom were bedbound, who have made full recoveries.
Recovery take time and effort, but is not impossible. If you remove any negative stressors from your life and then work at slowly but gradually building up your mental and physical activity levels, you stand a good chance of progressing towards recovery.
Talk to other people who have recovered and see what works for them, but above all don’t give up and never think that you will be ill for life, as that can be a self-fulfilling prophecy.
David was the first international member of Recovery. On his website he has published a scientific model for CFS/ME: Persistent Burnout Theory of Chronic Fatigue Syndrome. Read here.