This is Part 2 of the article by Russell Fleming. The first part can be found here.
*Trigger Warning: Suicide References*
We have made a downloadable PDF of both parts of this article.
HOW IT ALL BEGAN
Like many, my story began with an acute viral infection. I was 30 years old and living in Jersey – having been transferred from the UK several years before. I worked for Lloyds Private Banking and was recruited from college. I was an investment manager and independent financial adviser but had also enjoyed several other roles including in marketing where I led a team on the Bank’s merger with TSB.
I loved my career and was on the fast-track. I had a lot of friends, a good social life, and was physically very active. My life was a good balance and my mental health was excellent. My dreams were to continue with my travels abroad and to settle down and start a family. I believed I had a bright future.
I was conditioned to believe that viruses can be fought, that recovery might take a couple of weeks at most, but that I would always return to full-health. Chronic illness was never on my radar. I had had glandular fever at the age of 21, which meant three weeks off work, and had experienced full-blown Flu. I was sick a lot as a child. But each time I would bounce back – full of energy – to carry on with life without looking back.
In 1999 I went on holiday with friends, picked up an infection, brought it back home, spent time in hospital, and felt like I had been poleaxed. The suddenness with which my life changed and the extent to which the illness left me physically impaired, hit my mental health especially hard.
A year later and my functional ability had not improved, I hadn’t been able to return to work, and the diagnosis of a post-viral fatigue syndrome (PVFS) had become myalgic encephalomyelitis (ME/ CFS).
I was traumatised. I was terribly ill and for long periods of time I couldn’t leave my bed. I didn’t know what was happening; I was confused, distressed, and had lost a lot of weight. It often felt like I was dying. My family didn’t know how to care for me and we received very little help from the NHS.
Even when my ability to cope was at its worst and my family felt out of its depth, there was nobody around to provide practical assistance or to tell us that I might have been eligible for welfare support or care from social services.
Symptom relieving drugs and antidepressants to help with pain, sleep, and mood had to be introduced slowly because they either had no effect or I was sensitive to them and the side effects.
It took a long time to find something that seemed to help even if it only did for a limited time. But such drugs only ever ‘took the edge off’ and did nothing to resolve the underlying disease process that I believe was causing most of the functional impairment.
Dealing with loss was incredibly hard. More so because I had a diagnosis that was still questioned. We also found it hard to get mental health support from the NHS but reached out to various counsellors and psychologists over the years because I had deteriorated so much.
At no time was it suggested that my mental health or attitude was causing or perpetuating ME/CFS. Unfortunately, this isn’t true for everyone. I had good and bad experiences with therapists but on the whole and when I was able, it was good to talk and get things off my chest with a professional.
When I was physically at my worst, so was my mental health; and I have found the reverse to be true as well. The possibility of becoming disabled was not something I had ever considered – who does? The shock of it was profound. My body no longer produced sufficient energy to allow me to function normally. I came to rely on others for my basic needs. It was degrading, and there was a lot of guilt and shame.
I didn’t know who I was anymore or what my purpose was in life. I often prayed for a different diagnosis – one that was more accepted and visible. If I had been diagnosed with multiple sclerosis for example, I think I would have coped better. I might have received more acceptance from friends, work colleagues, and certain healthcare professionals. The doubt about ME/CFS only served to make my ability to cope that much harder.
Because of ME/CFS:
- I lost my career – but received an early pension on the grounds of ill-health.
- I lost my fiancé – who stuck with me as long as she could but couldn’t handle my deteriorating ability to cope (I didn’t blame her).
- I attempted suicide.
- I spent a fortune chasing bogus treatments.
- I got into debt when my income dried up and had to go bankrupt.
- I returned to education as a disabled student but suffered several relapses and couldn’t complete my degree.
- I made various attempts to return to work in jobs I thought I could reasonably manage but couldn’t.
- I became reliant on welfare benefits to survive.
- I had to give up my dreams of marriage, children, and owning my own home…
Modern medicine is great. I am a fan. But nobody tells you that it’s fallible – least of all doctors. Chronic illness is not spoken about enough and healthcare provision is inadequate for people who struggle year after year.
A long-term condition like ME/ CFS can strike anyone at any time. The symptoms I experienced in those early years, felt the same as when I was infected by Parvovirus. I felt it had caused damage.
- I have since learned, and this is now true of Covid-19, that 5-10% of people who contract an infection can be left chronically ill and can meet the diagnostic criteria for ME/CFS at 3-6 months.
Yet the disbelief that people experience when describing ongoing symptoms and disability, the lack of biomedical research to try and understand why this is happening to those that it does, and the ineffective and often inappropriate management advice, continue to let us all down.
That effective treatments are still unavailable is incredibly demoralising.
The medical advice I received during those acute early years was to rest, rest, rest. It was the last thing I wanted to hear and I found it incredibly difficult doing so little, but for long periods it was all I could manage.
I have come to realise that it was probably the best advice I could have received. My body did need to heal, but aside from the few drugs that provided some relief from certain symptoms, I couldn’t see how things would really improve without a treatment that tackled the underlying problem.
The stress I experienced as an investment manager and from my other work in private banking was like nothing compared to the stress I felt from being off-work and trying to cope with something I couldn’t understand.
I didn’t want to be ill, and I definitely didn’t want ME/CFS and the misunderstanding that came with it. I didn’t want to depend on others. I didn’t want to be stuck in bed while my life passed me by.
I don’t think there was anything worse than being disabled and not knowing what was really wrong, or how to effectively fight it when everything I tried didn’t work or didn’t work as fast as I needed it to. It was the same for my family. All they had to go on at the time were the erroneous headlines about ‘Yuppie Flu’.
We coped as best we could. It was a very steep learning curve and we made many mistakes along the way. When I felt I could, or when my frustration drove me to it, I would push myself to do more. The problem was that my ambitions were unrealistic given my change in circumstance, and whatever I did always left me in a worse state.
My brain, that wonderful organ which had accomplished so much for me in life, couldn’t restart my body. It let me down and I couldn’t understand how – when I was such a positive person – I was tumbling down the rabbit hole into depression and despair.
MYALGIC ENCEPHALOPATHY/ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
ME/CFS affects a person’s ability to function – the way they think, remember, speak, stand, walk, sleep, initiate and complete daily tasks, and generate energy. It impacts their quality of life and that of their family.
Research has suggested the effects on quality of life are worse than they are for people with multiple sclerosis, cancer, diabetes, and other serious medical conditions, although in general, there appears to be a similar impact on mental health.
It robs a person of the vitality I think we all take for granted which makes it especially hard to manage. It can occur suddenly, and the trigger for the majority of people is an infection that is often acute.
Trying to do too much will often result in an increase in symptom severity, even a relapse, that is typically delayed by 24 hours. One of the difficulties that doctors have with ME/CFS is that the ‘great panacea’ for other illnesses, namely exercise – especially aerobic exercise – can cause harm.
Research has supported this phenomenon and the new NICE clinical guideline is alerting doctors against recommending exercise. Hopefully, over time symptoms will stabilise – it can be months, years, or decades – and people can show signs of relative improvement, which is when new activities – or an increase in the time and/or intensity spent doing an activity – might be attempted and maintained. Sometimes, these periods of stability might be fleeting, at others they can last longer and be built upon. Full recovery is rare and even a period of stability can prove false.
Self-management techniques such as pacing – where you learn what you can do within your limitations, what tasks you can delegate or spread out across several time periods, and where you attempt to stay within your ‘energy envelope’ – is the safest and most effective approach at this time. It isn’t an easy thing to learn. It will take time. But it is worth trying and returning to.
ME/CFS causes fluctuating symptoms, symptom severities, and functional abilities – for most it will adopt a relapsing-remitting course over many years. Symptoms can vary in intensity from hour-to-hour, day-to-day, and week-to-week etc. Relative recovery, if it occurs, is not in a straight line, there will be many ‘peaks and troughs’ along the way, and some people experience an illness that progressively gets worse or shows no sign of improvement at all. It can be quite individual and very unpredictable.
People who are very severely affected are wholly bedbound and require 24-hour care. They can’t walk or feed themselves and often can’t communicate. They can lose a lot of weight and can be extremely sensitive to light, noise, touch, and smell. They are the most neglected when they should receive the most care and support.
Around 25% of people with ME/CFS are severely affected at any one time – meaning they are confined to bed by the severity of their symptoms – and perhaps 5% are very severely affected, but there is a lack of research in this area which is shameful. Unfortunately, people have died from this condition or it has contributed to death as a result of complications and people ‘wasting away’.
If symptoms do stabilise, then a person can slowly learn to accept, adapt, and accommodate their disability. It is of course much easier said than done and can take an awfully long time, especially without good healthcare, social care, welfare, and family support.
Some people are better at acceptance and adapting than others. I resisted full acceptance for 10 years because it felt like I was giving up. I was very stubborn and didn’t want to surrender my dreams but, in the end, I realised they were holding me back.
Had I recovered, and I hoped I would after my time at university, then I would have returned to the Bank who had given me that option. But the relapses I experienced at university finally led to me seeing sense. My old life was over and I needed to make the best of the life I had.
Ultimately, I have been lucky, even after these two decades. If the physical symptoms hadn’t stablished and improved, if I hadn’t been able to give it time and be more certain of my abilities, I wouldn’t have been able to return to work, move into a new home, and find a new companion in Buster.
When this illness becomes chronic it may be unreasonable to think about returning to a previous life and career. But that doesn’t mean life lacks value and neither do people with ME/CFS. They are the bravest and most resilient people I have ever known and I hope they all get to experience the relative stability and improvement that I have achieved in recent years.
- Long-Term Conditions (of which ME/CFS is one example) are illnesses that cannot yet be cured but can be managed through medication and/or therapy.
- It has been estimated that over 26 million people in the UK live with a Long-Term Condition (around 40% of the population), and over 10 million live with two or more such conditions.
- People with Long Term Conditions account for over 50% of GP appointments, 64% of all outpatient appointments, and occupy 70% of hospital beds.
- Long Term Conditions represent a significant problem for the Government, NHS, and social care services. Research is lacking, and the solutions are inadequate (the above statistics are over five years old!).
ME/CFS is a neurological disease. It can affect anyone at any time of life and often becomes chronic or long-term. It is believed to be more prevalent in ethnic minority groups. Up to 75% of those affected are women. It is the biggest cause of long-term sickness absence from school. The number of people with ME/CFS has been estimated at 265,000 in the UK (0.4% of the population). It is likely that the majority remain undiagnosed or mislabelled and receive inadequate or inappropriate care and support.
A new NICE clinical guideline about ME/CFS has been published. It provides a framework of recommendations to the NHS and social care services and should lead to better understanding, support, and management options for people with the condition. It should also help increase early and accurate diagnosis. We recommend that anyone affected by ME/CFS should familiarise themselves with its content and discuss with their GP. A network of secondary care referral (outpatient) services exists across England and with the new guideline these should be improved and extended, with similar networks established for people who live in Northern Ireland, Scotland, and Wales.
The ME Association provides a large range of literature about ME/CFS (incl. Long Covid) written by Dr Charles Shepherd (Hon. Medical Adviser) and its other expert advisers. You can view all the booklets and leaflets by visiting the website shop where they can be purchased for a small fee (or are free) and downloaded. The ME Association website provides a lot of information for free and features regular blogs on relevant news and research developments, and its social media pages (e.g., Facebook) are a great place to visit and join in discussion about life with the condition.