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Living with Long Covid

‘Long COVID’ describes long-term symptoms that remain after the patient’s immediate recovery from COVID-19, and commonly include shortness of breath, fatigue, and ‘brain fog’.

In June 2021 we surveyed 295 members of our patient panel who had previously tested positive with COVID-19. A high percentage (65%) reported that they had experienced long COVID symptoms, respondents in Germany and France were least likely to have contracted long COVID (38% and 45% respectively), compared to a massive 88% of respondents in the UK, and 79% in the USA.

Although there is minimal literature discussing the reasons for a higher prevalence of long COVID in the UK and US, it is evident that their respective healthcare systems will need to accommodate the treatment of significant numbers of long COVID patients, whilst still trying to recover from the impact of the pandemic on waiting times and treatment pathways. 

Because ‘long COVID’ is still a new topic of conversation, we want to give patients living with the condition a voice, which might encourage others to share their own experiences.

We want to start by sharing the story of Claire, a woman who is living with type 1 diabetes in the UK and is now suffering from ‘long COVID’.

Have your symptoms, and their severity, been constant, or have they improved / worsened over time?

It took me around a month to get over the worst of the original COVID symptoms. I thought I was getting better slowly but then some of the symptoms stayed, and others came back after time, coming and going. I now have what appears to be permanent conditions due to COVID, including having to take medication for tachycardia (fast heart rate).

Some days I feel worse than others, but most days I feel very fatigued with a bad headache. Some of the symptoms that come and go include a sore throat, taste disturbances and a dizzy / light head. My pre-existing medical conditions have also been impacted, including high blood glucose levels (I am a type 1 diabetic), and my IBS worsening.

How do you feel about the support you’ve been given by your healthcare provider? Both physical and mental…

It’s in my GP notes that I suffer from long COVID, but I don’t personally feel like I have been given much support or help for it. During the first few weeks of my initial illness, the COVID team checked on me, but that stopped. It was also expected that I return to work as soon as I could after I was signed off for a month, and my workplace was not very understanding My diabetes consultant didn’t even give me any advice about how COVID can affect diabetics, or how to control it.

What more could they have done?

I believe that it would be helpful for those with long COVID to be given access to a support group or a clinic to attend, where they can get advice and talk to others with the condition. This would help them both physically and mentally. I also think that there should be occupational health support specifically for long COVID sufferers, to help them back into work and adjustments made, as well as information for managers so that they understand what their staff are going through and how it affects them.

Do you know other people with long COVID?

My parents, who both live with me, also have long COVID. My mother has been particularly unwell with it as she also has underlying conditions.

What would you want to tell politicians about your long COVID experiences, and what action do you think governments should take?

Long COVID is a very serious condition that many are suffering from. Not much is currently known about it, and it seems to affect people differently. Please invest more resources into research and support of this condition, so that it is more widely understood, and in future better treatment can be found for it. It should also be officially classed as a disability / chronic health condition for those who are badly affected from it, and who, for example, find it hard to work as a result.

Do you have a theory as to why some people are susceptible to long COVID, and some recover fully?

I think that those with other health conditions, especially those that influence their immune system, are more susceptible to it and react more badly than others. COVID seems to worsen some pre-existing medical conditions. I also think that age and genetics could also be a factor in this.

How do you feel about media coverage of long COVID?

From what I have seen, not much is said about long COVID in the media. Newspapers, TV, and social media all seem to include a lot of coverage on COVID itself, but not much about the long-term effects.

It is almost as if they are deliberately excluding it. More needs to be said, and it needs to be brought to the public’s attention that this is something serious that is happening. This may then help show those who think ‘COVID is a lie / conspiracy’ the severity of what is really happening.

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3 comments

  1. long covid can be disabiling and require appropriate address by interested physician who is expert in the field.

  2. I too have long Covid. I stayed 22 days in the hospital. I am now on oxygen, have ringing in my ears, I am extremely weak, my muscles hurt and I still have no taste and little smell after having Covid in May. I too my 1st vaccine on April 22, got Covid around May 14th and took 2nd vaccine on May 17th. Tested negative 2 times in the same time framer and tested positive on May 24. Stayed in hospital until June 15th and still have not recovered well. COVID-19 is real and can be spread no matter who you are!

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