“You’ll be fine, it’s just a virus”: Why Long Covid Cannot Be Treated the Way ME/cfs Has Been

This piece has been very hard to write, but I know – feel – that I have to share it with you.

When I was 14 and my viral infection turned into a long-term illness, I received zero support from medical professionals.

By zero I don’t use hyperbole. It was literally zero.

I saw different specialists. Not one of them helped me. Few, perhaps even none, believed me. Because ME/cfs (click here for more info on the condition) does not have a discernible biological cause. For now. And so while so many struggle with similar symptoms, we still go mostly untreated. To this day to have ME/cfs is to be met with scepticism in the medical world. And by extension, in society.

Even now, this remains a real and heartbreaking situation, because not much has changed. So to see the way Long Covid is currently treated has been a major trigger over the past several months, taking me back to a time when I needed help and guidance the most, but received none. And so this new – yet old – condition comes at me and people like me like a double edged sword.

(Note: For clarity reasons I will use Long Covid and ME/cfs separately, even though I believe they are in many cases one and the same condition considering their viral origins and corresponding symptoms. Yet because Coronavirus is causing a surge in new ME patients I wanted to distinguish them in this piece from those who have lived with it since before the pandemic. But know I consider them as one and the same condition!)

Any current media attention is very welcome and the way people with ongoing symptoms after contracting COVID-19 are taken seriously by them is quite a change from how I, and my fellow ME sufferers, are often treated still.

There is a discrepancy there however that I admit is at times hurtful, but hopefully it means change for us is also on the horizon, as long as we acknowledge they are in many cases the same condition – as Dr Fauci has confirmed – and don’t start separating the two as different entities.

Though, what has been the hardest to see is a continuous scepticism in society and the medical world when it comes to symptoms that are hard to explain and don’t seem to go away with the treatments we know and use for ailments where fatigue and post-exertion malaise are the main symptoms.

“You had Covid months ago. Exercise more and you’ll feel better.”

“Your Covid symptoms should be long gone. It must be all in your head.”

“Your bloodwork is fine. You’re healthy. You can go back to work. I’m sure with a routine your symptoms will then disappear.”

Spoiler alert: it is not helpful to question people’s experiences and this type of advice will only have a detrimental effect, no matter how well-meant. I know, because these types of “helpful” statements that I have heard for the past twenty years are the same many Long Covid patients are reporting to have heard from doctors, employers and friends today.

To think that in my twenty years of living with these debilitating symptoms nothing has changed in the way the world approaches such situations is utterly heartbreaking – and infuriating. We need to do better. Medical professionals need to do better and as a society we need to as well.

Illness is never one size fits all. While you may just experience a cold, your father might be in bed all week with severe illness, yet your mum may be without any symptoms, all from the same virus. Our immune systems and bodies are all different. They all respond differently. It is why I never recovered from a viral infection while my sister did from the same one.

Illness is personal. Illness varies. Illness manifests differently in everyone. I think it is hard for us all to acknowledge this. We want one pill to fix one illness. One vaccine to prevent and cure another. If it doesn’t turn out this way, we turn our backs on those who still suffer. We cannot deal with a reality wherein modern medicine is incapable of at least understanding and tracing symptoms.

And so we as a society have very far to go in believing those who are sick and experience symptoms without a direct biological cause and start taking individual experiences seriously. Instead of putting them on a harmful exercise regiment, we need to listen to those who have and got more sick. Instead of pushing someone to go back to work, we need to start believing someone when they say they can’t. Because trust me when I say: no one wants to sit at home and do nothing – I think if the past year has taught us anything it is that this is true.

Those of us having to live that life for the rest of our lives deserve as much respect as those who can go about their day without pain and fatigue after contracting the same virus.

So, believe the person with the symptoms. Support them. Help them, in any way you can. There is nothing worse for a human than have your experience, your truth put into question, disbelieved, even mocked. It will only lead to worsening health, physical and mental; never improved health.

To feel seen is to be connected to another. Support and being believed is all any one of us craves. It’s so simple, yet practically so difficult to come by.

Let’s change that, so that new generations of ME sufferers receive a much more humane treatment than I ever did. We need to seize this opportunity for this large group of people who are only just coming to grips with their new reality. We as a society have an obligation to help them. Now is the time to show up and empathise with and help those who will suffer longterm from this pandemic. Because ME is a tough illness to live with and patients deserve all the help and support we can give them, from those of us who have lived with it for so many years to the loved ones and doctors around them.

We may not yet be able to cure ME, but the time is now to show a humane treatment to its sufferers.

Because trust me, to be writing this twenty years after first getting sick is not what I expected. In fact, it is very difficult to acknowledge even to myself that so little has changed. And so for all those millions who are now becoming ill, please believe us when we talk about our experience of being – and staying – ill and be a part of helping us be seen. It would mean so much.

Thank you.

x Sandra

P.S. Do you struggle with Long Covid or ME/cfs and need someone to talk to? You can always drop me a line below, on Twitter or via E-mail. You are not alone!


6 thoughts on ““You’ll be fine, it’s just a virus”: Why Long Covid Cannot Be Treated the Way ME/cfs Has Been

  1. I couldn’t agree more Sandra! The time for longcovid to be recognised is now. Before mass vaccination starts to create a sense of things ‘going back to normal’. Milllions of people could be left behind, just as we have been. I sincerely hope that research into longcovid gets sufficient funding, because it will bring answers for us ME/CFS sufferers as well.

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  2. Very good, thought provoking and completely accurate article! I’ve had 3 long term health problems in my life. One was a recurring bacterial h. Pylori infection of the stomach that was, until about 20 years ago thought to not be possible so sufferers were treated with disdain. I believe the, at least, 30 year long infection resulted in ongoing reflux. Another, IBS was also relegated to the “all in your mind” category until recently. The direct cause(s) is/are still unknown but at least it is now considered a real thing among most doctors. I spent decades being told to try valium or seek therapy or I was dreaming or making it up. It’s maddening that people are still so off-handedly dismissed like ME sufferers are now.

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  3. I think there is just a lot of work that needs to be done on invisible disabilities/illnesses & the way they are perceived by the public, because those biases carry over into the medical profession & have a negative impact on funding for research & public services. It’s not just a matter of getting doctors to believe you; it’s a lot easier to keep fighting for the help you need of you have support from the people around you & the general public. The media portrayal of people who have these kind of conditions is often that they are some kind of scam artist who has concocted or exaggerated their illness for financial gain (the insult “benefit scum” is thrown around far too freely in the UK) or because they are simply lazy & that creates a hostile environment that makes it very difficult for those suffering to talk about their circumstances, which leads to so many people suffering in silence.

    Of course if you can get support & you are brave enough to push for help you are still met with so much gaslighting: “the tests came back negative”, “there’s nothing wrong”, “its psychosomatic”, “its all in your head”. Until you find yourself thinking, well maybe I am imagining it, maybe this is normal, maybe everyone is tired & in pain all the time & I’m just weak. It’s my fault. My family doctor who treated me from birth until my early thirties actually apologised eventually “I’m sorry I didn’t do more, I thought you were playing up for attention”, I wanted to scream. Would my life be different now had I been believed then? And you know what? If a child, or indeed an adult, is pretending to be ill for attention then they need your help, how about finding out what the underlying reasons are? Because this the other thing, mental & physical health needs have to be dealt with together not treated as separate conditions because one always impacts the other. Long Covid clearly includes a myriad of physical symptoms but many of those people are going to be left with deep anxiety & trauma also and those needs have to be met too.

    I would love to believe that the pandemic & its aftermath, which will be long & unpredictable would lead to a revolution in the the world treats those with long term illness, a move toward compassion & acceptance, but sadly I don’t think western culture is prepared to make those changes. And it is a cultural thing & it seems that even a pandemic isn’t enough to shake those foundations.

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    1. Completely agree and see each of your points. It’s just terrible how illness, mental and physical, is treated and it’s a vicious cycle I feel. And we have our own gov cases like the one describe. Report after report but nothing changes. Not until the same people and parties are in charge and as long as the majority of society is fine with how things are, because they obviously benefit.

      I can merely plea and hope. And that is currently hard to come by too. x

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