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COVID-19 & the 2nd wind blows into ME/CFS

Updated: Sep 6, 2020

I have a keen interest in what happens to our body after severe infection, particularly viral infection. And I would like to start my article by highlighting (with gratitude) ‘New Scientist’ who have pre-warned us, “Viral infections have previously been linked to problems with long-term fatigue symptoms. For example Chronic Fatigue Syndrome (CFS) which is also called myalgic encephalomyelitis (ME)"

The level of disability and suffering experienced by those with ME/CFS is difficult to put into words; patients are bedbound, housebound and in severe cases are left completely incapacitated. I am not writing this article to frighten people - it’s purely to educate and to ask everyone to start raising awareness for ME/CFS, now. We don’t want to address this issue too late. Because it generally takes at least six months after infection, in order to diagnose ME/CFS, the concept in relation to COVID-19 is only just starting to trickle in but my prediction is that this has the potential to snowball.

Due to the lack of research funding behind ME/CFS illness it will continue to mystify our top doctors for much longer than six months. That's a fact, not a prediction. But if we can promote the awareness for ME/CFS now, then perhaps what’s to come can be prevented.

I do have some faith that the medical community will eventually correspond with the relatively small group of Scientists who are pioneering in ME/CFS research – it’s actually already started – but as an OMF Ambassador, my determination is to accelerate the process in any way possible for the ME/CFS people whom I represent. And that is why I felt compelled to write this piece.

I noticed that the confusion within the medical field relating to COVID-19, post-viral syndrome and ME/CFS is beginning. An example being in The Guardian, ‘Weird as hell’: the COVID-19 patients who have symptoms for months.’ Professor Paul Garner of infectious diseases speaks of his (unfortunately personal) experience with protracted, prolonged Coronavirus. Professor Paul Garner describes the severity of the second wind attached to COVID-19 and then states that the long tail is not some ‘post-viral fatigue syndrome.’ This didn’t quite sit right with me, because he was describing (very accurately) all of the symptoms of post viral fatigue syndrome and ME/CFS.

Fortunately Professor Paul Garner has since commented further to say "it gives you some of the symptoms that are very similar to chronic fatigue but I am hesitant about calling it that ... I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms." And just now, writing this paragraph, fate would have it that I stopped to take a tea break and I came across his latest article “COVID-19 and fatigue – a game of snakes and ladders.” Thankfully, Garner is turning it around – edging closer towards calling it what it is. He says, “I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long.” Professor Garner likens the way he felt to being 'abused by somebody' or 'clubbed over the head with a cricket bat.'

I speak out in recognition of the approximately twenty million people with ME/CFS. Now, more than ever, is the time to re-tweet and re-post these words. Quarantine is forever for the people diagnosed with ME/CFS. We are experiencing a world pandemic driven by viral infection, now is the time to take every action within our power. It must be recognised that the post-COVID is just another way to describe a post viral fatigue syndrome, which after six months of persistent symptoms can be diagnosed as ME/CFS. I will not see ME/CFS be the next hot topic under a different guise.

Perhaps from a scientist’s perspective, regardless of the name, it will just be helpful to see funding and research finally pushed in the right direction for ME/CFS, of course. But I have to speak out on behalf of the people with ME/CFS because I have promised to be a voice for the unheard. One of my concerns is that the social health benefits provided to "post-COVID" patients may not be extended to ME/CFS patients because of the name. I personally refuse to see the Millions Missing, miss out again. Please help to spread awareness of ME/CFS before COVID-19 does it for us.

Due to the ignorance of people over the years (historically) a stigma was once attached to ME/CFS – in the same way that ‘hysteria’ was once used to describe multiple sclerosis. For years and years ME/CFS has been cast aside because of this. Post-viral illness has the ability to disable a fit healthy individual forever. Depending upon the severity of ME/CFS the inability to function and perform daily activities can leave a person unable to work, socialise or even hold a phone conversation whilst dealing with chronic pain. And this can last for years and years.

Imagine being fit and healthy, catching a virus, surviving it, but never getting better. There are people with ME/CFS who struggle to even get outside in a wheelchair because they need to remain reclined for relief. There are many potential scientific reasons as to why an ME/CFS patient remains bedbound for over 6 months after infection including a cross over with orthostatic intolerance and possible lack of blood flow to the brain. As an OMF Ambassador it is my intent to write more on this. But for now I must stress until the Doctors have the funding in place they are limited to explore that which desperately needs to be further investigated.

I appreciate it is difficult to contemplate; for the average healthy person the concept seems implausible and farfetched that a virus of any sort has been doing this to people for so many years – but once upon a time those who have been severely affected over the years by many different viruses, were just like you! We cannot ignore this any longer.  The number of COVID-19 cases will likely increase the number of ME/CFS diagnoses significantly over the next few years. The worldwide exposure to the brutality of ME/CFS will be appreciate by those who have previously suffered in silence.

Top doctors (infectious diseases, cardiologists and GPs) are openly embarrassed by the lack of knowledge on the topic of post-viral illness and whilst they fully empathise with the devastation it causes, they can only offer insufficient and sometimes damaging support to patients who fall into the category. 

The top specialists who dare to take on the challenge of solving the mystery behind post-viral fatigue typically have a personal connection - because once you see it first hand it's impossible not to take action upon the injustice.  We need more scientists who are forward thinking, innovative and unafraid of the unknown. These are the characteristics of the cutting-edge scientists that Open Medical Foundation is raising funds to support, and I am so honoured to be associated with their team.

Let’s end on a positive note - OMF is raising funds for a new study in relation to ME/CFS and COVID-19 – which is fantastic news. As Newton says, 'to every action there is an equal and opposite reaction.' I believe we will beat COVID-19 and I also believe we will overcome post-viral illness, ME/CFS.

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