We desperately need more research | Long Covid Kids Real Life Stories

"Long Covid has transformed our once active, healthy, fun loving and travel enthusiast family into one of housebound isolation."

It’s a constant struggle with education, health and benefits systems to get any support. It’s very stressful to have so many obstacles to access healthcare and education. Healthcare basically doesn’t exist on the NHS and even referrals for testing aren’t available. 

Unfortunately, my own health has deteriorated due to long covid ME/CFS and I’ve gone from racing cross country and road running to bedbound in a ‘crash’. This has left me unable to do much other than rest and wait out for my body to restabilise.  

Both of my kids (aged 14, 10) are off school due to ill health. It has been a challenge to be believed that their symptoms mean that school attendance is not possible. One of them has been too unwell to access home tuition and the other has home tuition from the local authority. 

Neither is seen by a dedicated NHS long covid service. One has been referred out of area service who give advice on pacing. We are fortunate to have an understanding allergist locally who has been of immense help and support. Their other symptoms are helped by private doctors. There is no cure, only symptom management. 

We desperately need more research into long covid ME/CFS. Their lives are barely more than existence. What future is there for them? 

Crucially, reinfection with Covid has left them more disabled. This is unsustainable and we go to lengths to avoid another infection. Neither is back to their previous health baseline after the last infection 20 months ago.