Covid-19 and Post Viral Fatigue (PVF):
Is it ME/CFS?
Over recent weeks I’ve noticed an increase on the discussion of Post Viral Fatigue (PVF). Whilst this isn’t a blog to explain the illness, I do hope this will bring some awareness to others navigating these conditions.
COVID-19 has impacted many people all around the world. We have passed 6 months since those who have survived the virus began their recovery, and more and more stories are appearing about some experiencing ongoing problems with breathlessness and extreme fatigue.
*Additional health implications are being reported, but I wanted to focus on the fatigue for this blog.
I’m a member of a few support pages for ME/CFS across social media, and there has been a number of people joining who are experiencing these issues. Many were previously super-fit but are now unable to make it up the stairs without a rest. It may be too early to know for sure how long recovery will take; however, it is important to recognise the correlation of developing a virus and then the onset of PVF. With Covid-19, it appears this could be the case as well.
Let’s get talking..
Whilst it is great that these symptoms are now being discussed, and awareness is rapidly growing, it is causing a little frustration for some of those who already live with ME/CFS.
Although I do not share the frustrations myself, I do ‘get it’. With little awareness of ME/CFS, it can feel like you are forgotten, and not important in terms of the real daily struggles that are often faced.
One of the greatest battles is getting others to recognise the impact that chronic fatigue (and all of the other neurological symptoms) have upon a persons’ entire life. Being shamed by others because of a lack of understanding, has been the experience of many living with this debilitating condition. Many develop ME/CFS as a result of viral infections which led to chronic fatigue.
Like those whose stories we are hearing at the moment, many of us diagnosed with ME/CFS were previously fit & healthy. Lots, myself included, developed PVF following multiple viral infections in quick succession. When recovery did not happen, this diagnosis became ME/CFS. After 9 years, I have now accepted that I am unlikely to ever fully recover. It has been, and continues to be difficult, and I, like many others, have had to adapt my life completely in order to regain some sort of normality – regardless of how exiguous it may be.
Raising awareness
Although there are some positive signs in terms of a growing awareness of ME/CFS prior to the Covid-19 pandemic, it remains a condition that is largely unknown and often misunderstood by many– including those within the medical professions.
I know that some who have lived with ME/CFS for many years are becoming frustrated at the focus on Covid-related fatigue, however I do believe that any awareness around how debilitating PVF or ME/CFS is; is a positive. Of course, there is going to be a keen interest in Covid-19 related PVF – it’s ‘new’ and it has, and continues to, consume our lives. It’s frightening and nobody can be sure what long-term impact it could have upon our bodies.
For me, respecting the experience of everyone is always so important. Not everyone experiences PVF or ME/CFS in the same way. It is a condition that can improve for many but can also be progressive for others. Some are able to manage their health quite successfully, whereas others are mostly housebound, or bed bound. This is why I don’t feel frustration towards the focus on Covid ‘long haulers’, instead I feel some hope, and an awful lot of empathy.
Remember…
Regardless of how your condition developed, let’s not forget how scary it can feel at the beginning, how adjusting to these new limitations that have been put upon our bodies is confusing and at times very lonely. As with any new illness, it can take time to fully understand long-term implications. For those whose fatigue improves – let’s celebrate it. For those whose fatigue remains or worsens – let’s support them.
Let’s continue to bring light to the struggle of those living with chronic illness, and maybe now that there is a focus on the impact of long-term fatigue, the potential for future research and a deeper understanding has gained some significance.
Support each other. Be kind. Let’s raise awareness together.
Lynsey x
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