In his blog for the British Medical Journal professor Garner wrote about his "protracted illness" with "the constantly shifting, bizarre symptoms, and their unpredictable course.” He went through a "roller coaster of ill health, extreme emotions and utter exhaustion.” Some days he "felt better and became optimistic” but then the next day he felt "as though someone had hit me around the head with a cricket bat.” "Symptoms come and go, are strange and frightening. The exhaustion is severe, real, and part of the illness. And we all need support and love from the community around us."
As I was reading professor Garner’s account of his symptoms, including my personal nemesis, “foggy brain”, I felt much comforted. After all, it always helps to know that you are not the only person on the planet going through something difficult. This applies to illnesses as well as new mothers finding it hard to breastfeed, people experiencing anxiety, children feeling jealous of their younger siblings, you name it. It helps because shared hardship is always a little easier to bear.
Unfortunately, I didn't feel comforted for long. Professor Garner documented an illness I have been diagnosed with seven years ago to the iota. Yet he concluded that the "long tail” he was experiencing was not, as some people explained to him, "some post-viral fatigue syndrome". It must be something more serious.
Before Professor Garner, millions of people all over the world have been diagnosed with some form of ME/CFS, a debilitating illness which affects several body systems and manifests itself with a variety of symptoms including, most commonly, debilitating fatigue, which doesn’t go away. Post-viral fatigue is a diagnosis given to patients when following a blood test it is possible to ascertain that the illness had been caused by a virus (although the science is unclear as to why some people develop post viral fatigue and others don’t.) It is also assumed that post viral fatigue is temporary and may disappear after six months or so. If it doesn’t, the illness is referred to as ME/CFS or chronic fatigue syndrome.
Do you know why professor Garner was in denial? He must have across a stand-up sketch by Ricky Gervais where he described ME as the illness of lazy people who can't be bothered to work. The reason the professor was looking for some kind of explanation other than "post viral fatigue" is because of its stigma.
Stigma is incredibly prevalent in our society. We have made lots of progress to reduce gender, race, health and other stereotypes but ask a black, gay or a disabled person about their day-to-day experiences and you'll get a more accurate picture than the broad brush headlines would suggest. The trouble is, we seldom do.
Let me go back to professor Garner for a while.
The good news is that just two weeks later after his first post professor published a new article. He had clearly been contacted by ME/CFS sufferers who connected him with experts who helped to clear the misunderstanding. Post viral fatigue after Covid-19 might be a new phenomenon but people had previously developed exactly the same long-lasting symptoms after Eppstein-Barr virus, SARS, dengue fever, etc.
In his new post he wrote that he was reading about common ME/CFS symptoms such as “boom and bust” when you feel a bit better and are eager to do something like a walk with your newly found energy only to crash the next day, "brain fog", relapses, muscle pain etc. He learned about “pacing” (a very effective technique which means you have to schedule your activities e.g. you cannot both go to a supermarket and go for a walk in one day). He has been listening to the ME/CFS community.
"I am taken aback that doctors have been so dismissive of what these patients have been saying for so long.”
He discovered first hand how damaging the current NICE advice is regarding ME/CFS. The advice is graded exercise therapy (indeed, my own GP advised me to exercise and increase intensity every week. Luckily, during my seven years of suffering, I became a bit of a specialist and know more than my own doctor who is, as her title suggests, a mere general practitioner.) Professor Garner wrote: “Gentle exercise or walking made me worse - I would feel absolutely dreadful the next day.” As for CBT (the second and final advice for ME/CFS patients), I’ll let you have a go at talking yourself out of Covid-19 or cancer or Alzheimer’s. Fortunately, NICE guidelines have finally been put under review and we can only hope that they would be removed before they cause more harm.
At the end of his second article, Professor Garner advises fellow sufferers to make sure "families and friends understand what we are going through. We all need kindness at these times, and employers need to understand, be sympathetic, and allow their staff time to convalesce.”
The ignorance displayed by a medical professional when he first got ill and denied post viral fatigue was an actual illness was hurtful. Over the years I've heard everything from "but you don't look ill" to "you're only making up an illness to draw attention to yourself." In the case of ME/CFS sufferers, the stigma breeds stereotypes (lazy, flaky, drama queen), unhelpful labelling ("the sick friend"), social exclusion (why bother inviting her - she'll cancel anyway) and even discrimination (e.g. being made redundant). There are of course many other examples such as speaking in a certain accent may attract a label of low intelligence. A fat person may be stigmatised as lacking discipline and therefore being unemployable.
I'm not an expert in sociology but I can see that such stigmas result in a stream of negative consequences including poor mental health, low productivity and inequality. So what can we do to correct our own ignorance where it matters?
Professor Garner came round because of his personal experience. But surely we cannot live like this because a man will never understand what a woman goes through when she gives birth. We can talk about empathy and compassion but what does it mean in practice?
First, we talk. Second, we listen. The two go hand in hand.
People suffering from invisible illnesses will only be able to open up and share their experiences if they feel they are being actively listened to. It is still incredibly brave to talk about mental illness or cohesive control or feeling estranged from your child. There are plenty of taboo subjects out there. And yet I think we must start somewhere and provide accepting and understanding platforms in our families, circles of friends and workplaces.
I got ill with Covid-19 on 23 March. The illness lasted for about two weeks but I’m yet to recover my health. While I know I got rid of Covid (I had a strong antibody test, my lungs X ray is clear and my blood tests came back normal), I now have post viral fatigue with my immune system still fighting the virus.
I have an advantage of having had post viral fatigue before and recognising the symptoms. There is no cure but I know how to mitigate symptoms with pacing and plenty of rest. I also hope that a wave of post viral fatigue after Covid-19 will attract attention and proper funding will become available for much needed research.
On the other hand, my reality is a little bleak. My previous illness never went away and I got stuck with ME/CFS ever since. Gradually, I got much better. Last summer I started running for the first time, by autumn I was exercising even more intensively and I was able to accomplish a stressful project at work. In January I climbed to 4,550m when travelling in Ethiopia. This current setback is difficult to deal with because I feel I’ve been taken prisoner again and thrown into a cell.
Still, fortunately, I do know how to cope and I have a strong network of supportive friends around me. The stigma of having an invisible illness such as ME/CFS has lessened considerably in the last seven years with many openly talking about their experiences. There is greater public support from flexible working practices to Transport for London distributing “Please offer me a sit” badges.
We can all get involved and try a little harder. Let's talk about our experiences, ask questions, practise to become better listeners and not fall for lazy stereotypes. It's Mental Health Awareness week so I'll leave you with a quote by Albert Camus: "Nobody realises that some people expend tremendous energy merely to be normal."