Why the world needs to wake up to post-viral disease

Chronically ill activist and ME/CFS advocate Fran Haddock tells her story of living with ME, and delves into the historic and ongoing neglect of post-viral diseases.

I first became unwell with post-viral fatigue syndrome at the age of 15 following a suspected case of glandular fever. The symptoms lasted months and consisted of a scary range of indescribable fatigue, headaches, heart palpitations, and generally feeling like an alien in my own body. At that time, the doctors couldn’t offer me anything except pain relief and advice to ‘drink herbal tea and relax’. It was terrifying as a teenager not knowing when or if I would recover. Luckily I did; that is for 13 years at least.

Training for a marathon and working full time as a vet in 2018, I started to experience overwhelming fatigue sensations of feeling like my body was made of lead; continuing to run made me sicker and sicker, and I felt like I had a virus for months on end. The onset was more insidious than my previous experience, and I tried to push through the symptoms. I didn’t take time off work, and the doctors didn’t tell me to rest or give me any advice until I was eventually diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) a year later.

Almost 5 years later, I had just about begrudgingly learnt to adjust my life around this debilitating condition. I had to cut my work to three days a week and then two. I was unable to do almost any physical activity except my work and short walks on good days, and suffered from what is known as ‘post-exertional malaise’, a significant worsening of symptoms after any activity (mental, physical or emotional).

It was tough, but most of the time, I was still able to operate cognitively from the bed where I moved my focus and purpose to online activism. I was still able to get out and connect with nature and able to socialise if I was careful. My ME was in the mild category, and despite being fully aware of and always advocating for the whole spectrum of ME severity, it wasn’t until catching Covid recently that I had my own glimpse into the true horror this disease can bring.

After careful avoidance for 3 years and despite being fully vaccinated and still masking, Covid hit me hard. The Covid symptoms were horrendous, but it was the obvious worsening of my ME/CFS symptoms that took me to the darkest places. This included episodes of near paralysis where I was unable to move or speak, needing assistance with basic activities like being fed and washed, episodes of uncontrollable tremors, and not having the energy or cognitive ability to even be able to look at my phone, a tv or a computer screen. The most severe weakness and fatigue you could ever imagine was also combined with a range of ‘dysautonomia’ symptoms we now know are common with Covid and long Covid like rapid heart rate, adrenaline surges and insomnia.

This went on for over a month, but I am incredibly thankful to be gradually improving. I can only hope to get back to my previous baseline, but the reality is some people never improve from the toughest places I only briefly glimpsed, or if they do it can take many years.

There are an estimated 2.2 million people living with long Covid in the UK, and an estimated 19 million in the US. Governments have lifted Covid precautions and told us it is no longer a deadly virus, with shielders and the vulnerable being completely forgotten. Although the likelihood of death from Covid may have decreased, life-changing and life-destroying after effects of the virus have not. Consequences that being young, fit, vaccinated and living a healthy lifestyle may offer you no protection against. Preliminary studies have shown nearly half of people with long Covid meet the diagnostic criteria for ME/CFS after 6 months, and many sufferers are receiving additional diagnoses of other neglected and misunderstood diseases such as POTS (postural orthostatic tachycardia syndrome) and MCAS (Mast Cell Activation Syndrome).

Long covid may have brought post-viral diseases into the limelight, but they are nothing new. Although people with ME/CFS have been reassured that Long Covid will bring research and funding, which will help us too, many sufferers see warning signs of the same mistakes being made, which have led to decades of stigmatisation and delay in progress for people with ME. Sufferers worry about being left behind yet again as Long Covid takes the centre stage.

ME/CFS hasn’t just been neglected as a disease, but patients have faced incredible amounts of harm through incorrect treatments, generally based on the false and disproven theory that ME/CFS is psychosomatic. Many patients have been pushed into severe categories and permanently worsened through the prescription of graded exercise therapy (GET), following a flawed and biased study. Although GET has now been removed from the NICE guidelines for ME/CFS, many ME patients and advocates are concerned that graded exercise therapies may still be being incorrectly recommended to long Covid patients who suffer from the hallmark ME symptom of post-exertional malaise.

Similarly to ME/CFS, women are much more likely to suffer from Long Covid than men, something which may add to the minimisation of symptoms and misdiagnosis of the illness being psychological in nature due to medical misogyny. Gender disparity in the funding of diseases is also a known phenomenon. The neglect of ME/CFS becomes even starker when you look at how little funding it receives compared to diseases which do not result in a poor quality of life, with studies showing it receives the least funding relative to its needs.

Many people with ME/CFS will tell you they have learnt more about their condition and received more support from fellow people with ME and ME advocates than medical professionals. This can be seen mirrored with Long Covid as members of support pages on Facebook and Reddit skyrocket, and many reports are also finding Long Covid sufferers are turning to disproven and expensive treatments due to a lack of answers elsewhere. The ME and Long Covid communities are incredible places, but we shouldn’t have to use our precious energy to continuously advocate for ourselves or fight to be believed.

As much as the general public wants to believe the pandemic is over and acquiring a significant post-viral disability isn’t something that will ever happen to them, it looks like we may be on track for Long Covid to start causing serious dents in how society functions. Long covid shrunk the American workforce by approximately 1.6 million full-time equivalent workers at any given time in the first 20 months of the pandemic, and in the UK an estimated 80,000 people have left work due to Long Covid, something that can also be seen mirrored with ME/CFS, with approximately 75% of sufferers being too unwell to work.

Personally, I’d rather not dwell on how long covid will impact our broken economic system but how these diseases have affected the friends I’ve made through this suffering; their pain, their relationships, their independence. Post-viral illness has taught me to find solace in taking life at a slower pace, be grateful for the tiny things, be compassionate and always keep hope. But it really is time that our hope and advocacy finally leads to an end of gaslighting and neglect, and is turned into recognition, funding, research and real action.

Fran Haddock