We were interested to read about life with long Covid and our hearts go out to the children described, and all the sufferers of this condition (Childhood, interrupted: 12-year-old Toby’s life with long Covid, 12 June). However, doctors are still debating the causes of long Covid. We are concerned about the science behind the “microclots” hypothesis as a cause of long Covid and have examined it academically.
The evidence base for “microclots” causing long Covid is tenuous to say the least: the research shows these particles are found in normal individuals and other conditions. This makes it unlikely that they are the cause of long Covid. Indeed, the particles are not actually clots; they are small particles of a protein called amyloid, which are not involved in blood clotting.
We examined the current published work recently and concluded that there is no evidence to suggest that treatment with blood-thinning drugs (also known as anticoagulants) is effective. These drugs can have serious side-effects, which raises ethical concerns if they are used outside well-conducted scientific randomised trials. We wanted to state these things so that individuals with long Covid have a balanced view of what the current scientific evidence shows. We need more research on the cause of long Covid and we welcome approaches that take into account a broad understanding of the condition.
Prof Beverley Hunt
Kings Health Care Partners
Dr Rebecca Kuehn and Prof Paul Garner
Liverpool School of Tropical Medicine
Like Toby, whose case is described in your article, my son is 12 and has had long Covid since 2021. He suffered the same fatigue and post-exertional malaise as Toby, but a radical change to his diet has made a massive difference to his health. Through trial and error, we have found his “safe foods”, which he has to stick to religiously. If he eats even a tiny bit of something that’s not “safe”, the fatigue comes back. Now, most days, his energy is good and he is able to go to school and even do PE, something we couldn’t imagine one year ago.
Emily McCarthy
Cambridge
My son has long Covid after becoming ill aged 11, early on in the pandemic, and having had leg pains and memory issues ever since. A further virus, most likely Covid again, last September, left him housebound, giddy, with little energy, and suffering from non-restorative sleep and post-exertional malaise. His school arranged some online lessons for him in English and maths.
Now 16, having not been well enough to sit GCSEs, I discover that from September, if he is too unwell to attend school or college in person, there is no education provision at all and no alternative but to pay for online tuition and exam entry. He was turned down for an education, health and care plan assessment. It cannot be right.
Penny Joelson
Potters Bar, Hertfordshire
My son was 10 when he contracted chronic fatigue after a very serious bout of influenza B that saw him in hospital for a week, paralysed from the armpits down. Back in 2012, there was no help and mostly we just waited. With the physical and psychological pain he endured, my son’s continual refrain was: “I just want to be normal and go to school.”
I want the family you interviewed to know that my son is now 21 and at university studying mechanical engineering, and thriving. I would say it was a combination of time and a very determined young boy.
Jane Cox
Anstruther, Fife
