It's more than 30 years since mainstream medicine acknowledged the existence of myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) – a condition characterised by debilitating fatigue, brain fog, sleeping problems, dizziness and pain.
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medicine → acknowledge → fatigue
In that time, there has been mounting scientific evidence ME/CFS – which affects more than 400,000 people in the UK – is a genuine ailment rooted in physical causes that can lead to a wide array of symptoms.
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that → mount → symptoms
Yet arguments have continued to rage over whether it's a 'real' illness (in the 1980s it was dubbed 'yuppie flu' as it seemed to mainly affect young professionals) or 'all in the mind'.
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it → continue → mind
That scepticism is partly due to the variety of non-specific symptoms associated with the condition.
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scepticism → associate → condition
But now scientists at the University of East Anglia have uncovered some of the strongest evidence yet that CFS is a physiological – rather than psychological – illness that may be due to changes in someone's DNA.
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that → uncover → DNA
What's more, they claim those changes might also explain chronic fatigue symptoms seen in at least four other common diseases – long Covid (which affects between 1.8 million and two million people), multiple sclerosis (MS), rheumatoid arthritis and post-traumatic stress disorder (PTSD).
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which → claim → people
For years, Emma Slack, 35, endured prejudice and disbelief – before finally having her debilitating tiredness, brain fog and sleep problems diagnosed as CFS
The study, reported earlier this month in the Journal of Translational Medicine, raises hopes a single therapy might be formulated to treat chronic fatigue in all five conditions – a total of around 5.7 million Britons.
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therapy → endure → Britons
Scientists studied the genetic make-up of people with all five illnesses and found they shared a common trait – a genetic 'switch' seemingly causing severe fatigue.
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they → study → fatigue
Research lead Professor Dmitry Pshezhetskiy, who specialises in treating ME/CFS, told Good Health: 'The thing that links all these conditions is that patients frequently report remarkably similar symptoms – overwhelming fatigue, brain fog, poor concentration, disturbed sleep and a dramatic reduction in everyday functioning.'
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patients → specialise → functioning
He and his team found similar 'epigenetic' changes in patients with these conditions.
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He → find → conditions
Epigenetics is where environmental factors such as stress and diet can switch genes on or off, so parts of our bodies' systems behave differently.
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parts → switch → systems
Although different genes were implicated in each condition, the result was the same in that the epigenetic switch that was tripped affected energy production – which could lead to chronic exhaustion.
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which → implicate → exhaustion
Those epigenetic changes may also disrupt the ways in which our bodies regulate metabolism, react to infection and respond to stress, he adds.
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he → disrupt → stress
'One of the most significant aspects of this discovery is that it provides objective, blood-based biological proof of disease,' he told Good Health.
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he → provide → Health
Other studies in recent years have also highlighted physical causes that could explain symptoms of ME/CFS.
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that → highlight → CFS
For example, an Australian study last year found ME/CFS was linked to simultaneous disruptions in the way sufferers' bodies generate energy and regulate their immune systems, reported the journal Cell.
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journal → find → systems
Other studies have suggested chronic fatigue can be caused by the immune system being over-reactive, treating normal stress as an infection, and causing exhausting, flu-like symptoms.
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system → suggest → symptoms
For patients with CFS such as Emma Slack, a mother-of-one from Newcastle, evidence of a distinct genetic cause also promises to help dispel the scepticism and dismissiveness that persistently confronts them.
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that → promise → them
For years, Emma, 35, endured prejudice and disbelief – before finally having her debilitating tiredness, brain fog and sleep problems diagnosed as CFS.
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tiredness → endure → CFS
Doctors initially blamed anxiety and sent her for counselling.
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Doctors → blame → counselling
She says others have implied she is lazy and ought to start running (previously doctors told ME/CFS patients to exercise, regardless of how they felt after doing it – but in 2021, the National Institute for Health and Care Excellence did a U-turn on this advice).
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Institute → say → advice
Emma's symptoms emerged in 2008, when she was 17.
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she → emerge → 2008
'I became unwell with a viral illness that was suspected to be glandular fever,' she says.
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she → become → illness
'I felt fluey with muscle aches and was so nauseous that I could not eat and I had fainting attacks.
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I → feel → attacks
Before contracting her viral illness, Emma had been very active, a keen dancer and runner.
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Emma → contract → illness
'There are still times when I need help just to get up the stairs.
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I → be → stairs
Often a flare-up means I'm in bed for a day or two.
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I → mean → day
My brain function goes and I can't even answer simple questions'
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I → go → questions
But she never recovered her energy levels and has since suffered with ongoing symptoms of fatigue, brain fog and sleep problems, which worsen if she does too much.
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she → recover → much
Over the years, her symptoms fluctuated.
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symptoms → fluctuate → years
Although Emma was able to study, eventually getting a PhD in epidemiology, her illness meant she frequently had to go part-time and work from home.
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she → study → home
'For years, I did not know what was wrong with me,' she recalls.
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she → know → me
'While on work placements for my degree I started to suffer badly.
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I → start → degree
I went to the doctors and I was misdiagnosed as having anxiety.
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I → go → anxiety
Emma consulted a counsellor: 'They told me that the symptoms were just down to "my inner child being stubborn, and that I needed to tell them that I was OK".
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I → consult → them
She was told to push herself harder – but 'it just made my symptoms so much worse'.
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symptoms → tell → herself
Then she was finally referred to a specialist and in 2017 was diagnosed with ME/CFS.
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she → refer → CFS
'It was a huge relief to have a diagnosis that finally made sense,' she says.
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she → have → sense
'However, this brought the realisation that there was nothing anyone in medicine could really do for me.
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anyone → bring → me
Meanwhile, the medical scepticism she experienced continued.
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she → experience → ?
…and 21 more, not listed.
The Aporia
