On Chronic Fatigue Syndrome

I fell ill in October 2014 and was essentially housebound for six months. During this time, the NHS supported me by carrying out numerous tests in order to work out why a previously fit, health and energetic person was completely unable to function. When all tests came back negative, I was diagnosed with Chronic Fatigue Syndrome (CFS) and was promptly discharged from the system.

This might suggest that someone with CFS just has to learn to manage the symptoms, but nothing could be further from the truth: one can tackle various aspects of the illness simultaneously. Recovery is at best very slow, and it's notoriously difficult to track progress during recovery: I used to describe living with CFS like playing a game of snakes and ladders where there are no ladders and you don't know how large the board is. All told, it took me almost fourteen months before I was able to function normally at work, and a further four months before I could say with confidence that I had recovered.

This note is a summary of what I learned during my year and a half of frustration, experimentation and online research. I've written a little about the illness itself, why it's not fully understood by the NHS, and I list ten things to consider when building towards a recovery from CFS. I am not a doctor of medicine, nor have I been part of any clinical trials into CFS, and I don't claim that what worked for me will work for everybody with CFS. However, in 2014/15 I wanted to find a detailed strategy that had helped someone to recover in the past, because then I would at least have something to try.

I learned a lot from the website of Sarah Myhill. Dr Myhill was a GP in the NHS before establishing her own private practice. She is an advocate of ecological medicine, and has many years of experience in treating those with chronic fatigue syndrome. Initially I was sceptical of her approach because she makes strong claims about a wide range of health issues, and I was doubly cautious when I read that she was banned from prescribing drugs by the General Medical Council in 2010. Despite all this, there's no doubt that she understands a great deal about CFS. Her understanding of the pattern of recovery from CFS is, in my experience, spot on.

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), post-viral fatigue syndrome, yuppie flu, and the more recent Systemic Exertion Intolerance Disease (SEID), is a debilitating illness that affects around a quarter of a million people in the UK (according to the NHS) and somewhere between 850,000 and 2.5 million people in the USA (according to the Institute of Medicine (IMO) of the National Academies of Sciences, Engineering and Medicine).

The UK medical community hasn't yet got to grips with the disease, but there has been some recent progress in the US in defining the illness (some very recent research led by Robert Naviaux at UC San Diego aims to find a definitive test). In February 2015, a report was published by a committee of experts convened by the IMO to examine the evidence base for CFS. They proposed the following diagnostic criteria for this disease:

A patient is said to have CFS if they have the following three symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest;
  2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
  3. Unrefreshing sleep;
and, in addition, they have at least one of the following two conditions:
  1. Cognitive impairment; or
  2. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).
The fatigue described here isn't the same as feeling exhausted after having too little sleep, though sleep my be very hard to come by, and it's not the same as being tired after exercising; it's a third way, summarised by the feeling that you don't have access to any energy. It hasn't been used up, it's simply not there. Other common manifestations of CFS include pain, failure to recover from a prior infection, and abnormal immune function. Symptoms of CFS can persist for years, and most patients never regain their pre-disease level of health or functioning. Note that the diagnostic criteria used in the UK by the NHS differ from those listed above, see here.

In short, CFS is an intolerance to exertion, and this means physical, emotional and mental exertion. Having an argument or getting upset can be as damaging as cycling 10 miles (which might have been easy before but is now impossible). Trying to get on with life despite the illness makes patients worse.

What can the NHS do for you?

When I fell ill I saw my doctor frequently and underwent many tests to rule out all sorts of illnesses that might have caused my sudden onset of fatigue. The NHS were brilliant at this: my doctor was understanding, the psychologist I met was incredibly supportive, and the nurses who carried out numerous tests were so kind. Six months after I fell ill, I was finally diagnosed with CFS.

At this point I was discharged from the system, and I think they made the right decision. The NHS guidelines on how to treat ME/CFS are:

Based on my understanding of CFS, the only approach here that is not actively damaging to someone with CFS is Cognitive Behavioural Therapy. If you want to know more why the decision-makers in the NHS misunderstands CFS so badly, the article by Rebecca Goldin describes why the PACE research study that influenced the NHS had flaws that "were enough to doom its results from the start".

So what should one do next in order to get better?

After being diagnosed, someone with CFS is told by the NHS that they have what is most likely a mental illness, whereas anyone who has suffered with CFS understands that it's physical. When I fell ill, I bought into the idea that both were probably right (and wrong), so I decided to tackle all aspects at the same time: the physical, the emotional and the mental.

The first step to recovery is to accept the severity of the situation. Your body is fundamentally broken, your brain may be unable to cope with the simplest things, and you have very little control over your emotions and possibly your hormones too. Someone struggling with severe symptoms is almost certainly doing too much every day, even if they think they're doing next to nothing. I once spent a whole day hanging one load of washing, and it took me days to recover from this effort. You have to learn to give your body the time it needs. The timeline for recovery is not a matter of weeks; it will takes months, and almost certainly many months.

Physical aspects of recovery

Here I list a few things that you can do to work on the physical aspects of CFS.

(1) Give up exercise
I have been a lifelong fan of exercise, and it was always my coping mechanism. I had to give this up completely (though when strong enough I took up yoga, see below). If you're certain that you suffer from CFS as defined above, don't let anyone tell you that exercise is a good idea. Gradually doing more exercise may be great for those suffering from depression, but it's a disaster for someone with CFS. One of the greatest misconceptions about CFS which gained ground following the publication of the PACE survey discussed by Rebecca Goldin's article above is that a "Fear of exercise is the biggest barrier to chronic fatigue syndrome recovery". Several books have been written about how Graded Exercise Therapy can help with CFS. They're all utter horseshit.

(2) Work out whether your immune system is compromised
My immune system was functioning very poorly at the start of my illness , and probably for several years before that. This meant I was in a cycle of boom and bust; I understand this is not uncommon. My body didn't have any of the normal illness symptoms - no runny nose, cough, high temperature - but quite regularly through my first winter with the illness, I felt completely awful for 7-10 days at a time. I guessed later that I'd probably been struggling with a virus after I had a minor "end of cold cough" for a day just before I started to feel less awful. If you have symptoms of colds - runny nose, etc - then that is a good thing, but otherwise if you do feel awful for an extended period of time, you may simply have a cold. The good news is that one can solve this problem by changing your diet.

(3) Change your diet
I gave up alcohol and caffeine at the start of my illness, but I didn't really start to recover until six months later when I saw a dietitian who advised me to give up gluten, dairy, refined sugar and processed foods. The goal was to revive my immune system, because I felt I couldn't understand the underlying CFS if I kept falling ill with various minor viruses. For about 8 months I also took:

I also took a handful of pills every day: Vitamins B and C, co-Q10 and acetyl L-carnitine. I can't say the extent to which these did me any good, and it was expensive to keep this up for 8 months, but I chose to gamble because by the time I changed my diet I was in severe danger of losing my job.

Emotional aspects of recovery

Here are a few things that you can do for the emotional aspects of CFS.

(4) Mindfulness meditation
The one really helpful thing I learned from the NHS was mindfulness meditation. The Mindfulness-Based Stress Reduction (MBSR) programme introduced by Jon Kabat-Zinn guides you through mindfulness exercises for 40 minutes a day, 6 days a week; a link to the `body scan' can be found here (ignore the first 3:40). One of the key benefits to the MBSR programme is that it can lead to more refreshing sleep. I'm very glad that my GP didn't suggest that I use sleeping pills.

(5) Online yoga
When I was housebound I started yoga on YouTube, beginning with this intro. I used lots of Adriene's videos, sometimes taking a couple of days to do each one. I suggest online yoga, because with CFS you won't be able to make it to a class. I've listed this as an Emotional aspect, because the benefit felt more emotional than physical.

(6) Cortisol and DHEA
Our adrenal glands produce the hormones cortisol and DHEA in inverse proportions, and many people with CFS have been producing too much cortisol (= too little DHEA). The adrenal test that I took (not through Sarah Myhill's website, she's expensive - another reason to be cautious!) showed that my adrenals were recovering slowly after a period of cortisol overproduction. Mindfulness and yoga both increase our production of DHEA, and I found that practising both mindfulness and yoga over time made my reaction to stress much more normal. When I was ill, my adrenal glands were uncontrollable: a shock of cortisol brought on by having to deal with my screaming toddler, a sudden shock, or even by applying hydrocortisone cream to my skin, would make it impossible for me to have a normal sleep pattern (I'd fall asleep but would wake four and a half hours later). I chose not to follow Sarah Myhill's advice about taking pregnenolone in order to increase my DHEA levels because many websites list numerous side effects.

(7) Get some fresh air and stay positive
Getting a little fresh air each day helped me to stay positive even when I couldn't really walk. Don't overdo it though, even if you feel able to, so stay very close to home. More than once I walked a little too far on a day when I was feeling good and it took a week or more to recover. Sometimes it's hard to maintain optimism because the good periods are never as long as you want them to be, but you have to bear in mind that you'll bounce back from the bad periods.

Mental aspects of recovery

Here are a few things to beware of concerning the mental aspects of CFS.

(8) Cognitive impairment and being easily overwhelmed
I found in the darkest months of my illness that I couldn't do simple arithmetic (I'm a mathematician - this was really frightening!). Also, multi-tasking was essentially impossible: I might be able to wash up or have a conversation, but I couldn't do both. Even when I was strong enough to drive a car, I couldn't talk or listen to music while I drove. This cognitive impairment, or "brain fog", seems to be common, but thankfully mine was temporary. While I don't know why my brain fog disappeared, I hope it's of some comfort to those with CFS that these symptoms can be temporary.

(9) Discipline and sleep hygiene
Discipline in all things is clearly central to recovery, so be as strong as you can mentally. In order to avoid overdoing it, you have to monitor at all times what you're doing, and stop before you crash. One aspect that takes some discipline to maintain for a long period is sleep hygiene: the need to go to bed at the same time every night (9pm for me) and avoiding computer or phones screens for an hour before, plus avoiding sleep during the day is important. Falling (or better to say, staying) asleep can prove to be difficult with CFS, but give yourself the best chance.

(10) Avoid social interaction
I don't know whether to characterise this as emotional or mental, but in any event, someone with CFS has to accept the fact that they'll be very dull for at least the next 6-9 months. Having no energy robs you of your personality: social interaction of any kind, even with family, requires energy, and it's easy to overdo it when focusing on someone else. Even if you feel great, limit seeing friends as much as possible, because the gains that you've made by being disciplined for weeks can be wiped out very quickly indeed. There's no escaping the fact that this illness is brutal.

The pattern of recovery

I wrote above that the pattern of recovery from CFS as described by Sarah Myhill reflects very well the experience that I had.

One piece of advice that I've given to those with CFS that I've met since I recovered is to avoid measuring how well you are by what you're able to do. This makes it all too tempting on a good day to try new things to see whether you're well enough to "do that". Instead, measure how well you are by how long it's been since you last crashed. You may well have to reset a few times, but each crash teaches you more about quite how close your boundaries are and hopefully makes you more likely to stay within your boundaries next time.

In the end, over a period of time I had fewer crashes and they became separated by longer periods. At last I had a period of 6-8 weeks when each week felt better than the previous week, then each day felt better than the previous day, until suddenly it was clear to me that I was well enough to very slowly and carefully start doing some of the things that I used to do.

Life after CFS

It is possible to regain full physical, emotional and mental function after suffering from CFS.

However, relapse is possible, so staying healthy requires some care and attention: you can't simply return to your pre-CFS life and expect to stay healthy for long. Understanding precisely what brought on CFS may not be straightforward, because there are many different causes, but analysing the underlying problems that led to the illness is an important step. Blood tests told me that at some point I must have had glandular fever (this is common to many people who've had CFS), but my CFS was most likely triggered by a combination of severe lack of sleep over a long period, significant stress at work through the summer of 2014, and probably a long-term dietary problem. The desire to blame external factors is very strong indeed, so a bit of self-awareness at this stage is essential!

In the longer term, someone who has recovered from CFS has to take responsibility for maintaining their own good health. Life will inevitably get complicated again, whether it's coming to terms with a death in the family, added pressure at work, or simply battling a virus. It's possible that someone who's recovered from CFS will always remain susceptible to a relapse, but on a more positive note, they also learned during the process of recovery what works well for them and what they have to avoid. Having recovered, it's also possible to help maintain a recovery by taking regular exercise, though overtraining can lead to increased levels of cortisol so make sure you train with a little Zen.

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