How to recover from ME/CFS (chronic fatigue syndrome)

I fell ill in October 2014 and was essentially housebound for six months and ill for a further eight 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, also known as ME/CFS, and was promptly discharged from the system.

This might suggest that someone with ME/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, but recovery is possible with the right advice, with discipline, and with support from family and friends.

This note is a summary of what I learned during my fourteen months of frustration, experimentation, online research and recovery. 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 ME/CFS. I am not a doctor of medicine, nor have I been part of any clinical trials into ME/CFS, and I don't claim that what worked for me will work for everybody with ME/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; the only piece of advice that'll cost you anything is item (4) below.

What is ME/CFS?

ME/CFS is the term used in the clinical research community to describe Myalgic Encephalomyelitis (ME), also known as Chronic fatigue syndrome (CFS), post-viral fatigue syndrome, yuppie flu, and the more recent (and by far the most accurate term) Systemic Exertion Intolerance Disease (SEID). This 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).

A significant step forward was taken in February 2015 when the US-based IMO convened a committee of experts to produce a report to examine the evidence base for ME/CFS. They proposed the following diagnostic criteria for this disease: a patient is said to have ME/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 simply don't have access to any energy. It hasn't been used up, it's just not there. Other common manifestations of ME/CFS include pain, failure to recover from a prior infection, and abnormal immune function. Symptoms of ME/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, ME/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 what they called chronic fatigue syndrome.

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 ME/CFS, the only approach here that is not actively damaging to someone with ME/CFS is Cognitive Behavioural Therapy. If you want to know more why the decision-makers in the NHS misunderstand ME/CFS so badly, the article by Rebecca Goldin describes why the PACE research study published in 2011 that influenced the NHS policy on ME/CFS had "flaws that were enough to doom its results from the start".

On the other hand, the volume of clinical research that has established evidence for physical changes to patients with ME/CFS is growing all the time; just google "ME/CFS research 2017" if you're interested.

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

After being diagnosed, someone with ME/CFS is told by the NHS that they have what is most likely a mental illness, whereas anyone who has suffered with ME/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 and the emotional/mental side.

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.

Below I list ten different things that someone with ME/CFS can do to help themselves to recover.

Physical aspects of recovery

I learned a lot about physical aspects of ME/CFS 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 ME/CFS. She was banned from prescribing drugs by the General Medical Council in 2010, but there's no doubt that she understands a great deal about ME/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 ME/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 ME/CFS. One of the greatest misconceptions about ME/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 ME/CFS; they're all utter horseshit. Instead you need to learn about pacing.

(2) Pacing
Pacing is the art of expending less energy than you have. It is almost impossible to convey how difficult this is during the early months of ME/CFS. You rest for days, and then when you feel like you have enough energy to do a little more, you do something that causes you to crash. The kicker is that your body is now capable of less than it was before you crashed, but you won't find that out until the next time you crash. This cycle repeats, and your boundaries close in around you, forcing you to stay indoors, and perhaps stay in bed for an extended period of time.

So how does one escape? The best advice that I read is the pattern of recovery from ME/CFS as described by Sarah Myhill. It's also worth bearing the following points in mind:

Note that pacing differs from Graded Exercise Therapy, even towards the end of the illness (when one can gradually increase activity) in that pacing asks that you listen to your body. As Sarah Myhill notes in her pattern of recovery, if you wake up feeling ill then you have to back off from increasing your activity level in order to avoid a crash; compare this with Graded Exercise Therapy which demands that you push through these bad periods.

(3) Work out if 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; apparently this is common. 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.

(4) 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 nutritionist who advised me to give up gluten, dairy, refined sugar and processed foods. I also ate more fat and protein than before, but less carbohydrate. The goal was to revive my immune system, because I felt I couldn't understand the underlying ME/CFS if I kept falling ill with various minor viruses.

Breakfasts were unrecognisable from my pre-illnes regime: scrambled eggs, spinach, tomates, olives, tomatoes, sauerkraut and almonds, plus a protein shake with banana and blueberries. I ate sauerkraut up to three times a day to help the immune system fight infection and to aid digestion.

For about 8 months I also took:

I can't say the extent to which taking all of these supplements did me any good, but it didn't feel like my recovery began until I was taking all of this. 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/Mental aspects of recovery

Sarah Myhill says almost nothing about the emotional and mental side of recovery, but my experience (and the experience of many others) suggests that this is an equally important aspect of recovery as the physical aspects described above.

(5) 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 grateful that my GP didn't suggest that I use sleeping pills), and it can also reduce the amount of cortisol that our adrenal glands produce. The adrenal test that I took in 2015 showed that my adrenals were recovering slowly after a period of cortisol overproduction. Again, this is quite common for those with ME/CFS. When I was ill my adrenal glands were uncontrollable: a burst 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. Many research studies (just google Jon Kabat-Zinn) establish that there are physical benefits from the regular practice of meditation.

(6) Online yoga
When I was housebound I started yoga on youtube, beginning with this intro. I used lots of Adriene's videos, sometimes taking days to do each one. I suggest online yoga, because with ME/CFS you won't be able to make it to a class. I found that practising both mindfulness and yoga over time made my reaction to stress much more normal.

(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. Don't catastrophise!

(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 ME/CFS that these symptoms can be temporary.

Discipline to aid recovery

(9) Discipline and sleep hygiene
Discipline in all things is central to recovery. 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 ME/CFS, but give yourself the best chance.

(10) Discipline and social interaction
Someone suffering from ME/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 (especially?) 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. 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 ME/CFS

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

However, relapse is possible, so staying healthy requires some care and attention: you can't simply return to your pre-ME/CFS life and expect to stay healthy for long. Understanding precisely what triggered the illness in the first place 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 ME/CFS), but my ME/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 ME/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 ME/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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