How many people were surprised to discover that Boris Johnson had branded long Covid "bollocks"?

My guess is that it probably shocked very few people who actually have the condition, along with the thousands of others living with post-viral illnesses such as ME, for whom doubt, stigma, and misunderstanding are sadly par for the course.

Anthony Metzer KC, speaking on behalf of long Covid groups, told the UK Covid inquiry on October 4 that the then-Prime Minister had "scrawled in capitals that long Covid was ‘bollocks’" on the front of documentation from the Department of Health and Social Care back in October 2020, adding that Mr Johnson "has admitted in his witness statement that he didn’t believe long Covid truly existed, dismissing it as ‘Gulf War Syndrome stuff’”.

As of January this year, the Office for National Statistics estimated that there were 1.2 million people in the UK who had been living with long Covid for at least a year.

Some recover naturally after a couple of months; others do not, for reasons that remain unclear.

Symptoms range from brain fog and joint pain to extreme fatigue, hallucinations, skin rashes, and heart palpitations.

READ MORE: Covid's not over - why some Scots are still shielding

Around one in 20 people told the ONS that their symptoms limited daily activities "a lot", including some who are housebound - or even bedbound - and no longer able to work.

A recent study of more than 250 UK patients who were hospitalised by Covid revealed that MRI scans showed one in three still had damage to organs including the lungs, brain and kidneys five months after discharge.

Even more puzzling, however, is the large number of people who developed crippling symptoms despite an initially mild Covid infection.

The Herald: The ONS study indicated that long Covid rates may be falling at the beginning of 2023 - suggesting that numbers recovering were outnumbering new cases - but surveillance has since been discontinuedThe ONS study indicated that long Covid rates may be falling at the beginning of 2023 - suggesting that numbers recovering were outnumbering new cases - but surveillance has since been discontinued (Image: Scottish Parliament)

A cure remains elusive but a team at the University of Derby announced on Thursday that they have recruited 100 patients who have been living with long Covid for more than two years for a nine-month study which will test whether remdesivir - an antiviral used to treat acute Covid - could reverse the condition.

The theory is that the virus persists in some cells, causing inflammation in the body and brain which translates into long Covid symptoms. If remdesivir succeeds in dialling this down it would be a major breakthrough for patients.

The sheer scale and complexity of the problem - and the lack of any definitive diagnostic test - remains fertile ground for scepticism, however.

Another recent study sparked controversy after suggesting that excessively broad definitions for long Covid had exaggerated its significance as a public health issue, with one scientist suggesting that "societal anxiety and fear around Covid-19 may contribute to the persistence of symptoms".

This echoed the kind of psychosomatic claims which have bedevilled ME/chronic fatigue for decades, arguably holding back progress in unravelling the mechanism behind it and moving patients any closer to a cure.

READ MORE: Masks, ventilation, data - why have we given up on Covid? 

Danny Altmann, a professor of immunology at Imperial College London, said that in fact the estimated 10% rate of post-Covid illness was "unsurprising to those with a track record in the field as it is reminiscent of related post-viral sequelae, including from SARS, MERS, Chikungunya and Ebola".

Research published just over a week ago also highlighted the existence of so-called 'long colds'.

In a sample of 1,343 UK adults who had tested positive for Covid and 472 who had a non-Covid respiratory infection, such as flu or a common cold, 22% of participants in both groups continued to experience ongoing issues more than four weeks later including breathlessness and fatigue.

The concept of post-viral illness is not new. The Spanish flu epidemic of 1918-20 left many individuals stricken by Encephalitis Lethargica, a neurological syndrome that took decades to resolve.

The Herald:

This dovetails with another exciting area of investigation which suggests that a small number of patients seemingly suffering from psychiatric and neurological disorders can be "brought back to life" by a mix of antibiotics, immunotherapy and steroids.

In June this year, the Washington Post reported on the case of April Burrell - a former straight A student who was suddenly plunged into a psychosis of auditory and visual hallucinations aged 21.

She was diagnosed with schizophrenia and spent 20 years institutionalised and mostly catatonic in psychiatric care. Antipsychotics, mood stabilisers and electroconvulsive therapy made no difference.

An unexpected breakthrough came when a pioneering clinician, Sander Markx - the director of precision psychiatry at Columbia University - instigated detailed bloodwork which revealed that April's immune system was pumping out antibodies that were attacking her body.

Brain scans revealed that her temporal lobes - areas implicated in schizophrenia and psychosis - were under siege.

The Herald: Psychiatrist Sander Markx is investigating whether treating autoimmune disorders can reverse psychiatric symptoms in some patientsPsychiatrist Sander Markx is investigating whether treating autoimmune disorders can reverse psychiatric symptoms in some patients (Image: YouTube)

April was diagnosed with lupus, an autoimmune disorder which generally attacks the skin, joints, kidneys and other organs, but - in April's case - seemed to only be targeting the brain.

This prompted Markx to hypothesise that the underlying cause of April's psychosis was biological and to set her on an experimental six-month regime of intravenous steroids and heavy-duty immunosuppressive drugs normally used in cancer treatment.

There were signs of improvement almost immediately and, in 2020, April was well enough to be discharged.

The turnaround echoes similar findings where children who have developed bizarre psychiatric symptoms and physical tics following an infection caused by group A Streptococcus - a common bacterium - have been cured by a course of antibiotics.

READ MORE: Long Covid, Awakenings, and the enigima of post-viral illness

The phenomenon - dubbed Paediatric Autoimmune-Neuropsychiatric Disorders Associated with Streptococcus (PANDAS) - remains controversial in mainstream psychiatry, but there is a growing appetite for research into whether bacterial and viral infections and the autoimmune and inflammatory processes they trigger may be more common than previously thought among patients with a variety of psychiatric conditions.

According to the Washington Post, researchers working with the New York state mental healthcare system have so far identified around 200 psychiatric patients with autoimmune diseases who may be helped by Markx's discovery.

Scientists around the world, including in the UK and Germany, are now conducting similar investigations.

Markx said: “These are the forgotten souls. We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.”