We were interested to read about life with prolonged 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 prolonged 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 prolonged Covid and have investigated it academically.
The evidence base for “microclots” causing long Covid is slim 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 prolonged Covid. Indeed, the particles are not actually lumps; these are small particles of a protein called amyloid, which is not involved in blood clotting.
We recently reviewed the current published work and concluded that there is no evidence to suggest that treatment with blood thinners (also known as anticoagulants) is effective. These drugs can have serious side effects, which raise ethical concerns if used outside of well-conducted scientific randomized 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 into the cause of long Covid and we welcome approaches that 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 Covid for a long time since 2021. He suffered the same fatigue and post-exercise malaise as Toby, but a radical change to his diet made a huge difference to his health. Through trial and error, we have found his “safe foods”, which he must stick to religiously. If he eats even a tiny bit of something that isn’t “safe”, the fatigue comes back. Now, most days, his energy is good and he can go to school and even do PE, something we couldn’t have imagined a year ago.
Emily McCarthy
Cambridge
My son has had Covid for a long time after becoming ill at the age of 11, early in the pandemic, and has had leg pains and memory problems ever since. Another virus, most likely Covid again, last September left him housebound, dizzy, low on 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, not being good 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 and no alternative but to go for online tuition and to pay examination admission. He was rejected for an education, health and care plan assessment. It can’t be right.
Penny Joelson
Potters Bar, Hertfordshire
My son was 10 when he developed chronic fatigue after a very severe bout of influenza B that saw him in the hospital for a week, paralyzed from the armpits down. In 2012 there was no help and mostly we just waited. With the physical and psychological pain he endured, my son’s constant 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 in college studying mechanical engineering, and thriving. I would say it was a combination of time and a very determined young lad.
Jane Cox
Anstruther, Fife
