For an illness that boasts such a myriad of symptoms, you might think that the Chronic Fatigue Syndrome battle starts and finishes there.

Each day is a challenge – some more than others. And just when there seems to be a glimmer of light, a temporary ‘remission’ of symptoms (or at least a waning of them), it rears its ugly head again.

The first year, for many, is taken up with visiting GPs and specialists, trying to find answers. Surely it’s not normal to be so ill, so often. And then, when the diagnosis of CFS (sometimes also known as Myalgic Encephalomyelitis (ME)) comes back, there’s the inevitable temptation to take to the internet, trying to understand this complaint and find a ‘cure’.

All this when, some days, you can barely lift your head off the pillow. That should be battle enough.

Except, for many CFS sufferers, the true battle begins when it comes to other people’s perceptions of it.

To be so ill, yet dismissed by so many, is a harsh blow. Worse when it comes from people who you think ought to know you better.

The battle begins

I can’t say exactly how long I’ve suffered from CFS – it certainly pre-dates any diagnosis and has gone on for at least three years; starting with recurrent throat and ear infections that became more frequent; and the after-effects of which lasted longer. I used to say to my mother that it felt as though there was something ‘evil’ inside me. I didn’t mean this in any paranormal manner – but I wasn’t using it as a metaphor either. I simply felt as if there was a something insidious creeping through my body, wreaking havoc. It wasn’t normal to feel like your life force was ebbing; and then reach a point where you actually wished you were dead, just so the pain and exhaustion went away.

I finally received a diagnosis about two years ago, after seeing a number of specialists. For anyone who believes that CFS sufferers are malingerers, actively seeking such an unspecified diagnosis, I can assure you that this isn’t the case. Not for me, nor for the majority of CFS sufferers. Of course, that’s not to say that a handful of people aren’t (in the same way that some people may fake whiplash for their own personal means). However, for most people with CFS, that diagnosis is not a positive one. It’s an answer without a solution.

I wanted, desperately, to be told there was a problem with my thyroid; a sinus issue; there was even a point, God help me, when I wished to be diagnosed with a minor, treatable form of cancer – because at least then there would be the hope of a cure. When I received the CFS diagnosis, I was told to go away and accept it. The consultant, who specialised in this area, had seen enough patients to realise that this is not the diagnosis people want, nor accept lightly. It leaves them foundering without any medical direction and they inevitably continue to look for answers. Once that diagnosis comes in, you’re on your own essentially. Not because the consultants don’t believe it exists – but because they don’t have anything to offer in the way of treatment.

And so begins a long road of medical denial and frantic research. You try one route after another in the hope of vanquishing this unfathomable complaint. For me, that began with cutting out meat; cutting out dairy; cutting out sodas and only drinking water or herbal tea; whipping up green smoothies; Beta Glucans; Amitriptyline; Chi Machines; Allicin; salt pipes. Believe me, the list was endless – and continues to this day.

Meanwhile, since the array of symptoms is so splendid and wide ranging, I battered my private medical insurance looking for another answer. Because, and I’ll say it again, I didn’t want to be ill with CFS. It was impacting hugely on my life. I had to take seven months off work, dropping my wage (forcing my husband and I to move out of our home). I had to call on all my reserves to try and ‘hide’ as much of my illness as possible from my 3 year old daughter – struggling with the guilt of knowing I couldn’t do the things I wanted to do with her. I was missing out on her life. I was missing out on my life. Days went by in a blur of pain and frustration.

During this time, a third consultant ran more blood analysis and discovered that I was testing off the chart for the Epstein Barr virus. That was a high point. Why? Because it proved that something had caused this. Glandular Fever, Lyme Disease, Epstein Barr . . . these are just a few conditions that can trigger CFS. And this diagnosis validated me, even if it didn’t help the symptoms.

So why was it that important to be validated? Because, by then, I was aware that many people just didn’t ‘get’ this condition – and many others didn’t believe it existed. People who I thought were good friends didn’t bother keeping in touch to see how I was. I knew that if it had been any other complaint, which didn’t carry the CFS stigma, I would have had their sympathy.

CFS – Clearly Fake Symptoms

Even now, having returned to work (again, most CFS sufferers want to work. They don’t want their lives to be put on hold. They are not using it as an excuse to opt out or take the easy route) I still face the flack – more so, because people assume that if you’re working you’re ‘cured’. So I often hide how I’m feeling – not wanting to bore people.

On days when I tell people that I feel bad, I’ve had comments along the lines of ‘Oh, I feel like that too’. Or ‘I think I might have CFS’. No, you don’t. CFS isn’t feeling exhausted because you’ve had a late night or it’s four days into the week and you’re ready for the weekend. It’s not feeling like you’re getting older and could do without a commute now. It’s unrelenting bone-crunching fatigue, combined with headaches, aching limbs, a low-grade sore throat most of the time, the inability to plan ahead (even for nice things) because you don’t know how you’re going to feel this time tomorrow.

It’s keeping everything crossed that you’ll be able to attend a friend’s wedding. It’s giving up socialising. It’s no holidays for three years (even though your addled body could do with a week on a beach) because you couldn’t even take the journey to the airport, far less the plane ride itself. It’s going to bed early, waking up and still feeling as though you haven’t slept. It’s climbing out of bed bent double because you can’t straighten up. It’s either missing taking your child to the park, or going but feeling like death – watching her through tear-filled eyes as you realise that this is time you’ll never get back but simply can’t enjoy. It’s rushing bedtime stories because, some days, you can barely keep your head up. It’s not watching your favourite programs when you’re off work sick – because this isn’t a cosy-up and ‘enjoy’ kind of ill – it’s an obliterating type of illness. It’s feeling that every day’s a battle and there’s no knowing if or when that battle’s going to end.

But the worst part of it all is the endless lack of understanding. People who are supposed to be friends don’t even bother to see how you are when you’re ill. Why? Because they believe that you’re malingering? That you’re faking your symptoms? Using CFS as an excuse to work from home? Because they think that, surely, you must be exaggerating and nobody could be ill for that long? I don’t have the answers – all I know is what the reactions are. The only bright spot is that my employers have taken this on board; without their support, enabling me to continue working, I would have lost yet another part of my life.

Try telling the man whose leg is hanging off it’s not ‘real’ pain

Recently, my husband overheard a conversation at his work. A colleague, who has MS, was speaking to someone and they were clarifying – ME or MS? The reply was, ‘No, the real one, MS’. This hit my husband hard. He is the one who lives with me. It hasn’t just impacted on my life, but his too. Meanwhile, his colleague gets injections for her MS and is able to enjoy a pretty normal life. He’s heard stories of her going out drinking; socialising with friends; enjoying a tipple with lunch, and he knows I can’t do any of that. She was able to go to her work’s Christmas party. I wasn’t able to go to mine. Yet, when her work duties are restricted, nobody bats an eyelid – despite the fact that she’s still managing to maintain a social life. He’s sat with me as I’ve cried tears of pain and frustration – he can see how ‘real’ it all is. I’m not living a normal life. I’m getting by, clinging to each day by my fingertips. So to hear someone dismiss ME/CFS as a condition that’s ‘not real’ is insulting in the extreme.

If we take symptoms alone as a mark of illness severity and put them on a sliding scale, then it’s entirely possible for someone with CFS to be living a far more restricted, pain-filled life than someone with MS (I’m using this as an example simply because the issue was raised about that being ‘real’ and the other not being real). And let’s not forget, people with CFS don’t have any medical interventions to help either. Some forms of cancer can have less impact on the body. I don’t say this to undermine cancer, in any of its manifestations (it’s the worst thing someone can be told they have) – I simply highlight it to demonstrate that, symptomatically, there are people who are treated for cancer and go on to live full, healthy, pain-free lives. As Llewellyn King – executive producer and host of the White House Chronicle – commented, ‘The world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead.” ’

Indeed, there are people with CFS who are wheelchair-bound, then bed-bound and, in severe cases, do lose their lives – either through the illness or due to the aforementioned suicide. By the same token, there are a host of recognised diseases and complaints that present with few symptoms and which are eminently treatable. A broken leg might be excruciating but it’s fixable. The one thing that can definitively be said about CFS is that it’s all about the symptoms. In fact, it’s probably one of the few conditions that is so symptom-heavy and solution-light.

Consequently, if I had to hazard a guess why people are so dismissive of CFS, it’s possibly because it’s been a victim of its name. ‘Fatigue’ doesn’t get anywhere close to summing up the array of symptoms that present. We associate fatigue with tiredness, lethargy, apathy; things that aren’t entirely positive. It’s easy to simply dismiss someone as lacking get-up-and-go. It leaves out the recurrent viruses, aching limbs, visual flickers and many other lesser-known symptoms. Unfortunately, the name is vague because nobody fully understands it yet. Even the more medical-sounding Myalgic Encephalomyelitis has been shortened to ME – which carries its own negative connotations and harks back to ‘yuppie flu’. I suspect though, when it’s eventually pinned down and given a specific medical label, it will then be recognised as one of those handful of conditions nobody wants to have the misfortune of contracting.

That said, this shouldn’t be a competition of diseases. Whenever anyone is ill, with anything, that person deserves to be treated with empathy, consideration and respect. Not to be told that their condition isn’t ‘real’.

So let’s talk about those real symptoms

I, and thousands of others, can tell you that CFS symptoms aren’t made up or imagined. In fact, I was ticking the CFS symptom boxes before I even knew what they were. I assure you that my muscle pain is very real – and I say this as someone who went through labour without any form of pain intervention. The headaches are real, as is the frequent dizziness that comes with a crash. The recurrent throat flare-ups (and ongoing low-level sore throat that never seems to disappear entirely), they’re real too. The burning feeling in the face; the tingling in the extremities; the leaden limbs; the crawling skin; the insomnia; the anxiety; the brain fog; the visual flickering; the neck pain; the regular bone-crunching exhaustion (think jet lag combined with running a marathon and a bout of flu). All these things (and more) are real. And you know what – CFS is such a giving condition that, sometimes, you experience a plethora of symptoms all at once.

I can guarantee you that most CFS sufferers are facing at least two or three symptoms even on a good day. In fact, ‘good’ days are when you only have a few symptoms at a low level. Our good days would be your bad days. And let’s not even talk about what happens to your body if you get a common cold – it can wipe you out for weeks. In three years there have been a handful of days when I’ve felt normal. Entirely normal. Free from pain, awake, energised. I have felt like I’m walking on air – happy, positive and vital. Yes, your body cries, I remember now, this is how it feels to be well. And then it all comes to a screeching halt.

If it’s all in the head, a lot of people are sharing one brain

Recently, I found a GP who is prescribing Low Dose Naltrexone to help alleviate the symptoms of CFS. I did well on this for a while – it was the first thing to ever make me feel relatively normal. However, about three months in, I had a huge crash. I called him and told him that, oddly, since I’d increased the dose it didn’t seem to be helping as much. He commented that he’d been hearing this a lot from patients. He said this is yet another reason why he knows that CFS is a genuine complaint – the very fact that the increased dosage is having the same effect on numerous people. Nobody who calls him knows this. Ergo, it proves that something is happening.

In the 1980s, CFS was referred to as ‘Yuppie flu’ – although it’s been around far longer than that. There was an unexplained outbreak among nurses at the Royal Free Hospital in 1955. So either a large group of nurses suddenly came down with a fit of the vapours at the same time, or something’s at work here that we still don’t understand. Indeed, there was also an outbreak of these symptoms at the Los Angeles County General Hospital in 1934. And as far back as 1750, Sir Richard Manningham reported a syndrome referred to as ‘febricula’ (little fever). There have also been suggestions in the Lancet and the British Medical Journal that, upon returning from the Crimean War, Florence Nightingale spent years housebound, too fatigued to take visitors. Now she’s not the type of woman who strikes me as having been a malingerer. In fact, many consultants will tell you that ME often affects those people who are the most driven – workaholics; people who’ve studied for degrees; those who have a can-do attitude.

Certainly, the medical profession now recognises CFS as a real condition – even if they don’t know what causes it or how to treat it. The most recent evidence indicates that there’s a difference in the brain scans of those suffering from CFS

Furthermore, it’s acknowledged that the disability rates of chronic fatigue syndrome patients are on a level with those who have lupus; MS; rheumatoid arthritis and a range of other serious conditions. In some cases, patients are housebound for years, while others have died of the complaint.

And let’s debunk another myth. CFS patients are not hypochondriacs. In fact, I now ignore a lot of symptoms, assuming they’re part of the CFS bundle. I’ve had an ongoing ear pain for 12 days that would have sent most other people to the GP. Instead, I’ve lived with it – as I live with all the other symptoms.

So, if I had to put one message out there to those who are fortunate enough not to have to do daily battle with their bodies – it’s to please, please not give CFS/ME/Fibromyalgia sufferers something else to battle. Namely a negative, unsympathetic, dismissive, disbelieving attitude.

Nobody wants to feel this way. If there is somebody at your work who seems to be getting ‘preferential’ treatment in terms of hours or home working; just consider the fact that they’re still trying to work, despite the hurdles they face. And if a friend is housebound or you haven’t seen them in a while, consider the fact that they may need your support. They aren’t choosing to opt out of life.

Because until CFS gains the same sympathetic recognition as other illnesses, you are sidelining a huge group of people – and this is a condition that can strike anyone at any time. Including the naysayers.

Last Update December 2014