Chronic fatigue syndrome: why extreme tiredness isn’t imaginary

Approximately 200,000 people suffer from chronic fatigue syndrome (CFS) in the UK, otherwise known as ME (myalgic encephalomyelitis), and as Medical Director of Bupa UK  Dr Steve Iley indicates, its manifestation is still shrouded in mystery, but it’s women who are most prone to developing it:

“The illness can be complicated and affect anyone, regardless of age, but is more common in women, though we don’t know why that’s the case.”

Anyone suffering with CFS will tell you that this isn’t the only unknown where the illness is concerned- from causes to treatments, there’s heated debate and little clarity on triggers and effective solutions. Just last month, a group of patients, MPs and academics wrote an open letter to The Lancet criticising current government and healthcare policy on the treatment of CFS, claiming that recommendations put into practice in 2011, such as increasing levels of exercise and seeking cognitive behavioral therapy (CBT), either didn’t improve symptoms, or in the case of exercise in particular, made it worse. The National Institute for Health and Care Excellence (NICE) is now carrying out a full review of treatment, but the results aren’t expected to be published until 2020.

For sufferers, day to day symptoms can fluctuate in severity, and can be hard to initially identify as markers of CFS, as Dr Iley explains:

“Symptoms include being unable to sleep properly, suffering from muscle or joint pain, excessive fatigue, headaches, problems thinking, remembering or concentrating and feeling dizzy or nauseous. It’s not easy to diagnose CFS, and there isn’t a specific test for it. The symptoms are really similar to a lot of other illnesses, most of which get better on their own, like a common cold or a viral infection. If you do have these symptoms, and they last for a period of three weeks or more, go and speak to your GP about it. Don’t panic, however, as CFS is relatively rare, and there could be a more straightforward explanation for your symptoms.”

While CFS is complex and manifests differently depending on the patient, its development often follows another health issue, and ongoing research means that there’s no universal treatment plan:

“Many people who have the disease develop it after an illness, such as glandular fever or pneumonia. Sometimes, CFS can also follow an episode of extreme stress or depression. Treatment really varies, depending on your symptoms and how they’re affecting you. Your GP or specialist will work with you to find the best course of treatment to suit you. There’s really not one single route when treating CFS, but a plan could include taking medication to control symptoms, carefully managing activity levels and learning breathing and relaxation techniques. While living with CFS can be very difficult if you have a severe form of it, it’s important to remember that the majority of people get a lot better and recover over time.”

From initial diagnosis to recovery periods and relapse, we spoke with two women living with CFS to discover how if affects their lives (social, professional and everything in between) and how they manage their condition, both physically and mentally.

Lucy was diagnosed with CFS in 2014, after years of enduring disabling symptoms

“I have always worked hard, at everything. I was the school netball captain, I was in the orchestra, the choir, I organised my leavers’ ball, I volunteered...I was academically successful and really sociable; I had a big group of friends, I organised good parties and I cared about everything and everyone.

I was neither mentally nor physically prepared to have a handicap that prevented me from being that person. I was diagnosed with M.E. in May 2014, but I first knew something wasn’t right when I went to university in September 2006.

I constantly felt tired, despite the fact that my ‘active hours’ of taught time came in at just 12 hours a week.  At the end of first year, having been to the doctor three or four times in nine months, I was told my new fatigue was ‘just one of those things’. I was eventually  found to be very slightly anaemic, but that the anaemia result was not of a level to cause me concern or even create a significant change in my energy levels.

By the time I finished university, I was still tired and the stress from completing my dissertation, applying for jobs, worrying about my relationship and money, was overwhelming. I recognise now that my mental health was incredibly poor at this point. I was awarded exceptional circumstances for my final exams with a medical note from my doctor, however, no tests were done to investigate why I might have been feeling like I did.

On the day after my graduation ceremony, I went to the doctor, as after our celebratory night out I fainted and had been vomiting for a couple of days. They prescribed me with antibiotics. Again, no tests were performed.

After graduating I started a job as a paralegal and was also studying part-time for a diploma in law. My commute was almost an hour and a half, three days a week, and I studied for the other two days. I was dedicated and excited beyond words at my new routine, but whenever I was revising and preparing for seminars, I would fall asleep, sometimes literally with my face in a book.

Other symptoms crept up too- I gained weight that I couldn’t shift, in spite of constant gym work and serious calorie cutting. I also had something known as ‘phantom limbs,’ where I felt that my arms were empty and even though they were moving it didn’t feel like I was controlling them. Combined with persistent headaches, skin issues such as eczema, acne and tiny blisters in my nose, thinning hair and the fact that I caught any bug or virus going around, I knew I had to seek medical help again.

I went back and forth to my GP at least nine times. This time my doctor ran tests to assess my thyroid function and vitamin and mineral levels- all returned normal.

It seemed that I just did not fit into the boxes the practitioners had available in terms of diagnosis and I therefore could not be helped

Everything eventually came to a head after suffering with tonsillitis three times. Each time I was given antibiotics, but nothing was flagged in terms of further investigation into my immune system function, and my mental health was never really considered throughout. My GP eventually said to me that my symptoms were likely psychosomatic. Her reasoning was because the results were normal and she didn’t think my concerns about my weight were justified.

In June 2011, a couple of weeks before my law school finals, I came down with tonsillitis again. I recovered relatively quickly but soon after discovered a small spot of blood in my urine and I collapsed on the same day. I was taken to hospital, but tests returned normal.

My law school finals were days away, but I also couldn’t shake the dizziness, headaches, fatigue and a constant feeling of being ‘swollen’ and hot. The feeling of running on empty had become a part of that of my day to day life, even when I was having a good day.

If I used the phrase ‘I feel too tired to do X’ it would typically be dismissed by my family, who are all hard workers and therefore experienced tiredness after a long day regularly. This was something different though- I was used to hard work, but this reaction wasn’t normal. My stress levels and mental health were made worse by the fact that no one could tell me what was wrong with me.

I think my outgoing personality type and previous active lifestyle choices made it more difficult for people to understand my condition

I eventually passed my exams and after time off work, looking after my body and mind and asking for help from those around me all began to help me to feel better. I still couldn’t do any exercise. Netball and the gym had previously been my stress reliever, but I remember trying some very light exercises at home, and the following day I felt dizzy and my headaches had increased. It made no sense to me- I had always been so active!

In 2012, after six months at a slower pace, I was back playing netball twice a week, into the gym three or four times, socialising, organising charity events, and I felt fantastic. Unfortunately this didn’t last long.

On moving jobs the following year, an illness hit me again. One morning I woke up with a very swollen face, my eyes were puffy, I was pale, I couldn’t see clearly and the dizziness and headaches were back.

The ‘illness’ side of it probably lasted a month. After this, the symptoms became my normality. My headaches felt like someone was tightening a band around my head, and my eyesight was blurred. My partner recalls reading texts off me that were incomprehensible. It was even too much to walk ten minutes to the tube in the morning and I must have fainted three or four times when on the tube.

Given how bad I felt, I returned to a new GP. She was obviously concerned about how difficult I was finding things, yet she made few suggestions about what we could do.

In January 2014 I decided to take a leave of absence from work and return to my parents’ house in Manchester. It was at the same time that I realised I needed some help to support my mental health and asked for counselling.

I also saw a neurologist, but was told that I probably had tension type headaches from carrying a backpack. I was given a leaflet. It seemed that I just did not fit in the boxes the practitioners had available in terms of diagnosis, and I therefore could not be helped. I felt patronised by professionals, as if I didn’t understand my own body.

My GP eventually told me that because I’d had the same symptoms for a persistent period of time, that I probably had post-viral fatigue, CFS or M.E.

I took to social media to find communities of people experiencing similar symptoms and this is where I eventually learned to feel ‘normal’,  or at least not alone. That said, you have to be careful online- as we all know there are health “gurus” on social media who, without necessarily being qualified to make suggestions on our health, do so without adequate regulation. The sad thing is that even I have been taken in by these fanatics and their fad diets out of absolute desperation. I’ve spent a lot of money, on these suggestions that didn’t necessarily support my body better.

Despite this, I found the communities of fellow sufferers on social media very helpful. The same people eventually pointed me in the direction of the first private doctor that made suggestions to me about about why I felt the way that I did, and I was referred to a CFS specialist.

My coping strategies

I avoid caffeine as much as possible. I’ll have some chocolate every now and then but I don’t drink tea, green tea or coffee because I don’t tend to function well if I do.

I also take a strong probiotic, morning and night. I vary the strands of bacteria every couple of months to build up healthy gut bacteria, which in turn can improve immune function.

When I am feeling incredibly run down I top up on echinacea, vitamin C, zinc and vitamin D in the winter months.

I have tried many different diets that have been recognised as making a positive impact on people with chronic fatigue and other autoimmune illnesses. I don’t eat much refined sugar, gluten or dairy (which I have a bad allergic reaction to since I was about 13). I’ve also tried more extreme diets such as the anti-candida diet (no fruit, carbs or anything high in sugar, including grains and beans and legumes). I’ve tried veganism. I’ve tried the paleo diet. I’d like to point out that none has had any success.

I had hormone tests done by my GP four months ago, and  it was recognised that my hormonal levels were completely out of synch. I’m supporting my hormonal imbalance using HRT, and am working with a registered nutritionist to make sure that my diet is as healthy as it can be.

Aiming for seven to eight hours of sleep a night is also integral to coping well

I’ve also now stepped away from netball and any cardio, for now. This has been one of the most difficult things, being so young and previously athletic. My weight fluctuates and my ability to control this is incredibly difficult when I can’t work out as I used to do. I’ve eventually welcomed calmer exercise practices such as yoga and swimming.

I have immense thanks to Youtube for bringing me guided meditation videos and breathing exercise techniques, all of which help to keep my cortisol levels in check.

Coming to terms with M.E

The word ‘fluctuating’ is key for me. I can be fine on a Monday morning before I get to work and the ten minute commute knocks me out. There’s no way to predict it, in spite of working very hard at trying to be ‘well.’

I’ve had to leave London, which breaks my heart, but I realised that my body couldn’t keep up with the expectations and requirements of my lifestyle and other burdens such as the cost of rent. I am still only able to work part time and my finances have taken a massive hit as a result. I rely heavily on my family, friends and my partner because I pay a significant amount for private healthcare.

I know that I am incredibly lucky compared to some. I’ve learned what works for me and what doesn’t and I do really hope that the grief I still feel often for how I wish I could live my life, can be addressed eventually through counselling, (which at the moment I can’t afford and all waiting lists near me are closed).

I think my personality type and my previous lifestyle choices made it more difficult for people to understand. When M.E sufferers are able to live a normal life, our symptoms do become invisible to others, and something they can’t even see us experience let alone be able to relate to.

There needs to be more done about understanding the illness and how it masquerades in different ways for different people. I do think there are strong links between our hormonal health, our energy levels and immune system function and therefore, I think there should be different approaches for men and women with the condition.

GPs need to place a better understanding on invisible illnesses, both physical and mental and be more open to a variety of testing and referring

I’m so excited to hopefully be attending my first, local ME network meeting in a few weeks. I wasn’t sure if I could make it, but the organiser’s response was “don’t worry- as M.E. sufferers, we tend to make plans that we can’t always live up to and we completely understand that.” This kind of consideration was music to my ears.”

Jessica was diagnosed with M.E after suffering an autoimmune disease

“I have borderline hashimoto's disease, which is an autoimmune disease where your body attacks organs, healthy tissue and blood cells. In my case my pituitary gland, thyroid and adrenal glands (which give you your “get up and go”) are affected. It has the same symptoms as ME and fibromyalgia. Chronic fatigue is one symptom - out of a lot - that full under this umbrella.

My body if also depleted of vitamin D and iron which contributes to my chronic fatigue.  My body doesn’t store these two essential vitamins. I have blood tests every few months to monitor my levels. I get really heavy periods too which doesn’t help in terms of iron. I take vitamin D, Ferrograd C (iron) and a daily dissolvable multi vitamin to help support my body.

I was put on steroids initially to get my body functioning and working as it should again, and now we take it every six months at a time to figure out what’s not right or working properly. I now see an osteomyologist who pumps and massages my organs - which are often inflamed. He is fantastic.

I used to run half marathons and was incredibly fit before I was diagnosed but now I just do a few runs a year and a 5k when I feel like it. As much as I’d love to run the London Marathon I can’t find time to dedicate to training, so now mostly do half marathon walks.  I have put on about three stone in two years as I just don’t have the energy to exercise and my body is always tired so it doesn’t burn as much fuel efficiently. My thyroid doesn’t function as it should either, which causes extra weight gain.

The way I’d describe it is being really hungover and severely jet lagged at the same time

I recently obtained a Healthwise referral from my doctor and my local BetterGym has specialised and tailor made classes for people with health problems, so I am under their guidance in terms of fitness. I also have a herniated disc in my back and an arthritic knee so I need to factor that in. The team is brilliant. It’s a three year programme- I go to hydrotherapy spa classes, use bikes, walk on the treadmill, do weights, swimming and occasional classes, and it’s only £14 a month. All surgeries have this referral scheme and I only found out as I saw a leaflet on my doctor’s desk while she was checking a pee sample. Definitely ask about it!

Living with chronic fatigue is tiresome- that’s on top of the actual physical tiredness. The way I’d describe it is being really hungover and severely jet lagged at the same time, and then having to go to work on top of that. If I’ve got my period, that adds to the fun. I can’t focus on work or commit to anything socially in that week.

I can sleep for ten hours and still wake up tired. I take siestas at the weekend, but one hour’s nap can turn into three or four, and then I’d still sleep again at night.

I have “flake out” weekends, where I literally spend the whole weekend in bed. I just listen to by body and if it’s telling me to rest up then I can literally shut my door on a Friday and not leave it until work on the Monday.

I’ve lost a few non-understanding friends who have stopped inviting me out. I also find it hard to date anyone as I can’t commit to anything- if I’ve had a busy day at work I just can’t function anymore and know I have about an hour to get home before my body crashes, so end up cancelling dinner dates last minute, which is horrible. Also, who wants to date someone with low energy and bouts of irritability?

I go to the theatre on my own if I feel like going out last minute and other people have plans already. It’s good to make the effort to get out. I sometimes even go out alone when I feel like getting out of the house but don’t have the energy to be sociable and chatty with my friends. It’s my perfect solution. You get talking to people if you feel like it anyway.  I live in London and there are so many amazing things happening and going on that I will often go on my own to dinner, the theatre, the cinema etc. It’s the same with travel. I often go on my own as it’s on my terms.

I have a great group of friends who just invite me to theirs, or I often have friends over to mine and then we take the night from there. If we’re having a great time I’ll have a quick snooze to power up before we go out for the night, or if they live far away and it’s a dinner party, I’d often still have a quick snooze after food to enable me to carry on being sociable later that evening.

As for work, I had an incredibly stressful job (in the legal profession) and when I didn’t know what was wrong with me all got a bit too much. I went to my line manager and she simply told me that I wasn’t the only one who was tired and busy.

I was signed off over Christmas and new year for a month by my doctor one year and then had to wait for my blood test results during the festive period before I was diagnosed. I had to get an NHS diagnosis as if medication was needed I’d get these for free rather than pay privately.

Work sent me to an Occupational Health Therapist who recommended a lighter workload, alongside other changes, which work failed to implement as they “didn’t have the resources”. It got worse and I kicked up a stink with HR. They still did nothing- this was despite two reports at the time from my OH therapist. I’d been in my job for nine years at this point and never asked from the HR department previously.

I requested to be moved to another department, and my requests kept being denied. My boss didn’t want to lose me, but also wasn’t willing to listen to what I was saying or to change my role. I felt very stuck.

I was looking at moving jobs or even suing the company,  but I liked what I did, was scared that another legal firm wouldn’t take me, liked the people I worked with and knew that I was in the right, and they were in the wrong. They needed to change, not me.

I then noticed forms for flexible working hours hidden away on our office intranet, so I filled one of these out. I had a meeting with a HR staffer just back from maternity leave, who couldn’t have been nicer or more sympathetic to what I was going through. She’d been through similar symptoms while pregnant, so knew how it felt.  She asked me for the full story and said she’d get back to me.

A year on, we now have unlimited mental health and wellbeing resources available at work

I now work Monday, Tuesday, Thursday and Friday (so Wednesdays off). This is perfect for me- I work for two days, have a rest and go to the gym on Wednesday, then work another two days and have two days off for the weekend.

I lose £10,000 a year through dropped hours, but I’m coping financially, and my health is far more important to me than cash.

Ironically I am also on the Heath and Safety committee at work, and last year mentioned that I think it’s terrible that mental health and well-being is not addressed in our place of work. I explained that I received no help or support previously. A year on, we now have unlimited resources available.

My coping strategies

Bedtime routine is key. I am mostly in bed by 9:30pm and read until 10:00pm - with my alarm set for 7:00am. If I oversleep, I feel worse. If I get up and go early I feel fine. The longer I leave it to get up, the worse I feel.

I also cleared all electrical items from my bedroom, which promotes restful sleep

I got rid of all my negative non-understanding friends!

I eat well- my diet is healthy. I take my vitamins and drink lots of water.

I rest as soon as I know a crash is coming on. I also schedule events on a Tuesday or Friday night, when I know I can recuperate the next day.

I drink alcohol in moderation, or not at all.

I practice mindfulness, and try not to get low or jealous of other people’s energy and enthusiasm. Basically, I try my best not to be a “negative Nancy”, where possible. It really is mind over matter, and while it’s tough trying to stay positive when you literally want to stay in bed all day, I manage it most of the time. I sometimes make a list in bed of what I want to accomplish for the day and I will myself to get up and then go about crossing off tasks as I go. These really can be as simple as having a shower, eating breakfast, making the bed and going to the library.

Getting out in the sun and for a walk whenever I can really helps- sometimes I even run during my lunch hour or at weekends.

I read books and journals on my condition too to stay informed and think of new ways I might be able to help myself.

Coming to terms with M.E

As is the case with any illness, everyone experiences something different- you just have to do what feels good for you. I know people undergoing worse things, so think of this when I have a weekend in bed feeling really low. I go with the flow for the good and bad days in equal measure, and for me it comes down to being grateful that I have what I do in life.

If you’re an M.E sufferer, or are supporting someone who is, you can seek help from the  ME Association website