Cambridge ME Support Group chair welcomes Moderna vaccine trials for Epstein-Barr virus

The chairman of the Cambridge ME Support Goup, Mark Harper, has welcomed Moderna’s announcement of preliminary trials for a vaccine for the Epstein-Barr virus, which some researchers believe is a implicated in chronic fatigue syndrome.

ME, or myalgic encephalomyelitis – commonly known as chronic fatigue syndrome – is a complex, chronic medical condition affecting multiple body systems which affects 250,000 people in the UK. Its pathophysiology is still being investigated but ME sufferers are relieved that the disease which affects 17m people worldwide is finally being recognised as a physical rather than as a psychological disorder.

It was only in October that NICE published its new guidelines on ME, which was also a heady moment for Dr Harper, a former physicist who acquired ME through an infection in the 1980s.

“The new guideline incorporates real changes compared to the 2007 version,” he said at the time. “Symbolically, it puts the name ‘myalgic encephalomyelitis’, the medical term, before ‘chronic fatigue syndrome’, the term coined by psychologists trying to define it as psychogenic.

“It shifts from treating ME as a vicious circle of hypochondria and deconditioning to treating it as a real, physical illness. The old 2007 guideline offered exercise and talking therapy – GET and CBT – as treatments; the new 2021 guideline recognises that there are as yet no proven treatments or cures. It sets out best practice for healthcare professionals to support people living with real chronic illness.

“This is more than symbolic. The old treatments were dangerous: they encouraged patients to ignore the severe limits ME places on available energy, leading them to over-exert themselves and worsening their illness. In some cases this led to serious decline, leaving people housebound, bedbound and even tube-fed.”

Fast forward to this week and Moderna’s involvement is another bright spot in what, for Mark and people like him, has too often been a difficult and lonely path.

“The reason for my excitement is that most cases of ME start after glandular fever, so the hope is that if you can prevent glandular fever you will also prevent most cases of ME. Too late for the likes of me, but very important for my grandchildren’s generation!

“The Epstein-Barr virus [EBV] does not only cause ME/CFS. A very large study in the US has just found that it is also the leading cause of multiple sclerosis. We also know that EBV is a causal factor in a number of malignant conditions including Burkitt’s lymphoma, non-Hodgkin’s lymphoma and nasopharyngeal carcinoma. EBV is very widespread indeed in the human population, and it persists in the nervous system for life.”

Mixed in with the delight at these two huge shifts in future prospects for ME sufferers is the poignant awareness of how ignorance about ME – the same ignorance which is also negatively impacting sufferers of Long Covid – had impacted already-difficult lives.

“Relief mixed with anger is how I feel,” says Mark, “and a growing realisation of how the gaslighting has affected me over the years.

“Instances reported by members of the group over the years have included fielding the snide comments from random people such as an optician who wrote ‘claims to have “ME”!!!’ and a laughing face on my notes, being actually yelled at – I kid you not – in doctors’ surgeries, being told I had depression on many other occasions, despite the fact that I have pretty much throughout remained quite a cheery soul, having access to support groups blocked in case it ‘gave me ideas’...”

Mark’s next ambition is that there will be an effect on benefits.

“I’m hopeful there will also be an effect on claims for sickness benefits,” he says. “In theory, Department of Work and Pensions assessments allow for the fact that ME is a variable illness: a claimant may be able to wash, dress and feed themselves one day, but not the next. In practice the process is made incredibly arduous and claimants succeed only if they can show they are incapacitated 100 per cent of the time. They are left impoverished, often alone, with both physical and mental health deteriorating as they battle to carry out the most basic tasks of life.”

Stéphane Bancel, the CEO of Moderna, said: “EBV is one of the most common viral infections in the world, and despite the fact that it causes infectious mononucleosis, which impacts millions of adolescents globally, no vaccine is currently available.

“The start of this Phase 1 study is a significant milestone as we continue to advance mRNA vaccines against latent viruses, which remain in the body for life after infection and can lead to chronic medical conditions. Moderna is committed to developing a portfolio of first-in-class vaccines against latent viruses for which there are no approved vaccines today, including vaccines against CMV, EBV and HIV.”

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