Special Report: Warning over 'tidal wave' of post-pandemic ME

Dr Sue Pemberton, an occupational therapist who has been working in ME - also known as chronic fatigue syndrome - for 30 years says that half of the patients being referred to her Yorkshire clinic at the beginning of this year were people recovering from coronavirus.

New Covid cases in Scotland have declined to levels last seen in September, but the long-term impact of the disease is 'still to come' according to ME experts

This may just be the tip of the iceberg, she warns.

“I think the damage is still to come. I think a lot of people aren’t going to their GPs yet. A lot of people are hoping that they will get better, or trying things themselves.

"You generally see with these sorts of problems that there is a delay before they’re expressed in services because you spend time going to your doctor, getting blood tests, your doctor says ‘go away and try this’, so I think the tidal wave is probably going to hit us in the future.”

ME is almost always - though not exclusively - triggered by viral infections.

The swine flu pandemic of 2009 and 2010, which is estimated to have infected at least 700 million worldwide, was followed by a more than two-fold increase in diagnoses of ME.

READ MORE: Why Brazil's Covid variant upended herd immunity

The coronavirus which causes Covid is deadlier but less contagious, infecting around 116 million to date.

An estimated one in 10 people, however, are experiencing prolonged, ME-like symptoms such as exhaustion and brain fog 12 or more weeks later.

Many of them are young people, previously fit and healthy, and whose Covid infections were mild.

To understand the potential scale of the tragedy looming ahead of us you have to understand what ME - full name, Myalgic encephalomyelitis - really means for patients.

One in four are housebound or bedbound. They can experience chronic pain; dysregulated immune responses; malfunctioning blood pressure, heart rate, and digestion;dizziness when standing; an inability to tolerate noise or light; difficulty concentrating or thinking; and - the hallmark symptom - post-exertional malaise.

This is an exhaustion so extreme that even simple tasks like making dinner, watching a film, or walking 100 yards can wipe patients out for days.

Quality of life is poorer on average than having congestive heart failure, and the suicide rate among ME patients is six times higher than the general population.

Although it affects nearly twice as many people in the UK as multiple sclerosis - 250,000 compared to 130,000 - historically it has received just one 20th of the research funding.

Dr Sue Pemberton is one of the UK's leading ME clinicians

There are no diagnostic tests, no pharmaceutical treatments, no cure, and official recommendations made as far back as 2003 on the need for more specialist ME nurses are yet to be fulfilled.

"Despite the huge numbers of people suffering with such a prolonged and devastating illness, healthcare and society in general show so little interest," said Dr Pemberton.

"The funding is not there, the medical support, the benefits. As human beings we can be so dismissive of things that we just don’t understand and choose to ignore things that make us so uncomfortable, so this illness has really been left in the shadows for a very long time.”

The pandemic has occurred at something of a crossroads moment for ME.

READ MORE: NHS bosses told to offer vaccinators shifts 'on same basis' amid pay row

Next month, England's National Institute for Clincal Excellence (NICE) will publish updated guidelines - likely to be adopted Scotland - which finally remove controversial recommendations for Graded Exercise Therapy (GET) stemming from a now discredited 'PACE' clinical trial, and which have been blamed for making half of ME patients sicker.

Worryingly, though, there are signs that some Long Covid patients are being encouraged to “push themselves” in exactly the same way which proved so disastrous for those with ME.

ME appears to be more prevalent in the West, but it is unclear whether this is due to sociocultural and environmental factors or better recognition (American ME and Chronic Fatigue Syndrome Society)

Sonya Chowdhury, chief executive of Action for ME, said she had been contacted this week by a GP alarmed after a Long Covid patient was told by a consultant rheumatologist “to do squats to help build up his strength”.

She said: “Luckily this person had a GP who understood post-exertional malaise and said ‘do not do that - that is not an evidence-based treatment’.

“We cannot repeat the mistakes that were made with ME and other post-viral conditions.

“Many of us are very concerned about the impact on people with Long Covid and wanting to make sure that we learn from the decades and decades of neglect and ignorance that has existed around ME.”

Janet Sylvester’s daughter, Emma, petitioned the Scottish Parliament to end graded exercise therapy for ME after she was involved in it through NHS Lothian’s participation in the PACE trial.

“She walked into those appointments and after trying to do graded exercise therapy she was in a wheelchair. It was quite traumatic,” said Mrs Sylvester, who now campaigns with the charity ME Action.

Emma was 19 when she went from being “one of those people who did everything at 110 miles an hour” to being plagued by exhaustion, headaches, and stomach problems following a severe throat infection eight years ago.

She is now housebound and unable to work.

Janet Sylvester wonders if her daughter Emma might have made a better recovery if doctors had believed her when she said graded exercise was making her worse, and fears similar mistakes could be made with Long Covid patients

Mrs Sylvester, from Edinburgh, remembers Emma being encouraged to gradually increase her activity week-on-week, from walking 100 yards to 120 and 140.

“When Emma went back and said ‘I can’t do it, I can’t walk anymore than 100 yards, I’ve tried it and it’s just making me ill’, she was told ‘you’re just not trying hard enough, it’s because you don’t want to get well’,” said Mrs Sylvester, choking back tears.

“I remember one birthday where Emma couldn’t sit up in bed and I just have this image of her trying to open her presents.

“I personally think that if she had been told to rest from the start she might not be as ill now, but who knows?

"That’s why people with Long Covid need to be told to rest and not to push through.”

READ MORE: Geneticists appeal for blood samples from people who had mild Covid symptoms

Dr David Strain, the BMA’s lead on the NHS Long Covid taskforce, has urged patients with the condition to “stay within their energy envelope”.

Speaking recently on a BBC Horizon coronavirus special he said scientists believe the disease harms the mitochondria - the biological batteries that power cell functions.

“Long Covid is effectively like having a run-down battery,” said Dr Strain.

“We’ve all seen a smartphone that’s had three or four years of use and it will die 15 minutes after you take it off the charger.

"Long Covid leaves your cells in exactly the same position.

“So if you know that you’re going to be exhausted after you walk a mile, stop 200 yards short, sit down, rest. Let your battery recharge naturally.”

The mitochondria is one avenue for Long Covid research.

Another is micro-circulation - the smallest blood vessels responsible for delivering oxygen, nutrients, and hormones to your body’s tissues, and which is potentially impaired in Long Covid and ME sufferers, who will also be directly compared in the studies to determine whether they are in fact the same condition.

Dr Strain said: “It’s a silver lining to this whole outbreak, that people who’ve been shouting about ME and CFS for the last 20 years are suddenly being heard.

"The hope is that as we develop a treatment for Long Covid, that can carry over and we can then start treating these people who’ve had CFS or ME for the last 20 years and been left with what is a life-changing physical illness that they’ve struggled to even have accepted as a disease in its own right.”

Also giving hope is the world’s largest genetic study into ME - the £3.2 million Decode ME project - which is being led by Edinburgh University and will analyse saliva samples from 20,000 people with the illness when it launches later this year.

Action for ME is recruiting the participants.

READ MORE: Covid leading to surge in dementia cases amid growing evidence disease 'attacks the brain'

Ms Chowdhury said: “We need to understand why some people who have Covid go on to restore their health, and what prevents others from getting better.

“The genetics team at Edinburgh will be undertaking analysis to see whether ME is partially genetic and if so, what causes it. This will help guide future treatment.

“This has been a significant win for the ME field globally, not just in the UK, because we have not seen this level of funding for a genetic study that is much needed. It could be a game changer.

“We’ve seen in asthma and other illnesses what significance a genome-wide study can make, and it can be transformative.”