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Mind over matter - a personal reflection on Chronic Fatigue Syndrome

A huge issue facing us following the outbreak of COVID-19 is the number of people suffering from ongoing symptoms or long-COVID. Over 500,000 people in the UK have self-reported long-term symptoms following an infection. Long-COVID is characterised by ongoing symptoms even after the infection is cleared, and these can last months or even years! It has been described by doctors as having parallels with other chronic conditions called myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), which are long-term syndromes categorised by intense levels of fatigue, often brought on after a viral infection. I am a researcher in mental health at King’s College London with personal experience of managing CFS and therefore have a vested interest in the way that this and similar conditions are discussed in the public sphere currently and how this may change after COVID.

I was diagnosed with Lyme disease in the summer of 2018 and have been experiencing bouts of debilitating fatigue ever since. A few months after I was bitten by a tick on Clapham Common, and I stupidly ignored the subsequent rash on my leg, my whole body started to feel like it was breaking down. It hurt to move, and I couldn’t think straight. I found myself confined to my flat as even the walk to Sainsbury's left me feeling as if I had run a marathon. My body took about 3 months and a huge course of antibiotics to finally feel back to ‘normal’. After this ordeal, I was so grateful to finally have my life back and be able to work, socialise and exercise again.

However, the familiar symptoms soon crept back. I spent hours in doctors’ offices trying to work out what was happening. It was no longer a Lyme infection or any other illness that could be easily diagnosed. So, what was wrong with me? After a few months, I finally got an answer. A case of post-viral chronic fatigue syndrome. I was told that there was no treatment to be had; ”Just try to be as healthy as possible” — easier said than done!

Of course, there has been research into possible treatments and therapies for chronic fatigue. A study called the ‘PACE’ trial published results in 2011 showing promising effects of Graded Exercise Therapy in the treatment of CFS/ME. However, this study raised a huge amount of controversy in the media, partly due to the fact that it seemed to emphasise that these conditions were psychiatric in nature and could be treated as such. This led to frustration and anger from patients and advocates who once again felt the biological nature of their illness was being undermined. More recently, the NICE guidelines for CFS/ME have been adjusted to advise patients to “stay within their energy envelope” to avoid a flare up of symptoms. Interventions such as graded exercise therapy and cognitive behavioural therapy are no longer recommended.

The chronic balancing act

The 3 years that followed my infection have been a constant balancing act. I have periods of normality and, honestly, almost forget that I am sick. I start to fall back into my normal London life of working full-time with dinner parties, netball matches, pub trips and exercise classes filling every spare hour I’m not sleeping or working. And then it hits me again. Suddenly, I can no longer get up the stairs to my flat without feeling breathless; my brain feels like cotton wool and by 3pm my body is aching as if I have been doing hours of manual labour instead of sitting at a desk.

Once this happens, I must stop. I cancel everything I can afford to and live a life of the ‘bare minimum’. This can last for weeks, but thankfully over the years these ‘flare ups’ have started to become shorter and more sporadic, for which I am incredibly grateful. In the world of CFS/ME this is referred to as ‘post-exertional malaise’ where periods of too much, or even ‘normal’ levels of activity result in a relapse of symptoms.

Amanda Seyfried in ‘Mean Girls’ (2004)

Understandably these periods of symptom flare-ups have a huge impact on my mental health. It kills my self-esteem to suddenly be unable. My performance at work temporarily declines and I see myself as a terrible friend having to cancel on birthday dinners, workouts, and everything in between. I am suddenly worse at everything: making mistakes due to the inability to think straight, and not having the strength to do everything I want to do.

The key to managing CFS/ME is to never overdo it and to “stay within your energy envelope”, as described in the newly updated NICE guidelines. Nisreen Alwan, an associate professor in Mental health, explained in a recent blog about Long-COVID in the BMJ “you have to drop your baseline by 90%; you are a different person.” Obviously, this is a very difficult thing to accept. Going from a healthy person to constantly adjusting to make allowances for your health on a long-term basis makes the psychological impact of these conditions enormous.

Living with the stigma

One of the hardest things about dealing with CFS/ME is not being understood and facing the huge stigma that follows these ‘invisible’ conditions. “But everyone’s tired”, “It’s all in your head”, “It’s not a real illness” are comments I have heard regularly over the last 3 years. As explained by Eleanor Byrne, in a recent blog for Inspire the Mind, a large part of the stigma around these conditions comes from the fact that they are not understood on a biological level. There are currently no diagnostic markers in the body that Doctors can pin-point to diagnose or treat CFS, which leads a lot of people to (wrongly) assert that the symptoms are purely psychological — it’s all in your head! However, progress has been made in research to point out clear physical changes that seem to be linked to the development of CFS including a reduced level of the stress hormone Cortisol, or an increase in inflammatory biomarkers such as TGF-β. This indicates that there are clear biological underpinnings to these conditions — even if we do not fully understand them yet!

In my experience, the high rates of stigma and misunderstanding around these conditions are a huge social barrier to adequate management and symptom recovery. I have put off seeking medical help for my fatigue due to bad experiences with doctors in the past and fear of not being believed or taken seriously.

But stigma is not limited to the medical field. I have forced myself to work and socialise when feeling at my absolute worst due to being too embarrassed to explain how I was feeling. After enough cynical comments, I convinced myself I was just lazy and not deserving of any help or recovery time, so I tried to push through the fatigue and force myself into my normal routine. This only made my flare ups last longer and become more frequent. One of the largest contributions to the stigma, I believe, is that chronic conditions aren’t linear. I can feel great for months before having another flare up. During a flare up, I can push myself to work extra hours on a project but then need to collapse on the sofa all weekend. I can understand why some people then find it difficult to comprehend, and struggle to accept, that I am not able to do everything. They question the legitimacy of my decisions to cancel certain obligations over others. Unfortunately, with CFS it is inevitable that compromises must be made, and at some point, I have to sacrifice somewhere, whether it be work or socialising. This can be very emotionally difficult as I also suffer from a chronic case of FOMO (fear of missing out).

The emergence of Long-COVID

When I first heard about long-COVID and the huge numbers of people struggling with debilitating fatigue following a coronavirus infection, it sounded all too familiar. This is just like me. And selfishly, I felt… relieved.

Developing chronic fatigue has completely changed my life and Long-COVID will be a massive challenge not only physically, but mentally for those who have developed it. Adequate mental health provision needs to be put in place swiftly to support people with managing Long-COVID and other similar conditions to enable them to live functioning and fulfilling lives in society.

However, from my experience, the most helpful thing we can all do in the short term to help individuals like myself with long-term fatigue is to treat them with understanding and empathy rather than cynicism. This will not only empower people to manage their condition in the way that suits them, also go some way to mitigate the huge psychological challenge that comes with developing these conditions.

The emergence of ‘Long-COVID’ has sparked a lot of conversation in the public sphere around related conditions including ME/CFS including in a piece for the Guardian by Professor Carmine Pariante. I hope that the small silver lining of the pandemic and future challenge of Long-COVID will be more conversation, awareness, and research into these poorly understood conditions, and will result in, at least, more understanding and acceptance from the medical community and public as a whole.

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