Talking point: Those with ME should not be forgotten in the fight against long COVID
On our second date, Emma told me about her illness.
It was a sharing of something significant amid all the nervous small talk of mutual interests and bands we both liked.
But in the very early stages of our relationship, its significance was lost on me, someone who, like the population at large, knew very little of ME (myalgic encephalomyelitis).
ME has multitudinous symptoms but perhaps the most common is extreme tiredness. Sufferers exhibit no visible signs, yet it has the power to ruin lives.
Years after we first met, I am only beginning to fully realise the impact this pernicious and badly understood illness has had on Emma and the estimated 250,000 other sufferers across the UK.
Thousands of lives, overwhelmingly those of young women, stopped in their tracks by an illness which remains largely a mystery.
Tragically, sufferers have for years been served a massive injustice by much of the medical community and the NHS, which failed to take the disease seriously, causing them to be seen as malingerers and allowing sections of the press to routinely trot out the phrase ‘yuppie flu’.
Why any young person with their life ahead of them would suddenly decide on an existence of days in bed, missed opportunities and cancelled nights out has never been fully explained by those cynics.
But finally, there is cause for some optimism and it comes from an unlikely source – the pandemic.
In the early days of COVID-19 there were reports of previously fit young people falling ill and then failing to properly recover.
For many thousands of people in this country the condition we have now come to know as ‘long COVID’ has turned these past months into a living nightmare of crushing fatigue, phantom pains and heavy depression.
It is the same nightmare those with ME have been forced to endure in the shadows for many, many years.
The one bright spot of the pandemic has been a reminder of the power of human ingenuity and how science can make the world a better place.
Despite initial predictions that it would take years to produce a COVID vaccine, we now have several of them just months down the line. Where there is a will, there is so often a way.
That same effort now needs to be directed towards addressing long COVID, a suite of symptoms which is likely to place a huge burden on the NHS for many years to come.
It’s my hope that this will also encourage more research into ME and unlock much-needed funding that will help the many thousands of sufferers who have been badly let down by medical science for too long.
When not being ignored, they’ve been insulted with solutions such as graded exercise plans and cognitive behavioural therapy (CBT) as if their condition is an imagined one.
Emma still has difficult days, but there are others where we can see a ray of light, a hope that she’ll be able to throw of an illness which has shackled her potential and stolen her youth.
There are so many lessons to be learned from this pandemic, so many ways we’ve been given a chance to put things right.
I hope that for Emma and thousands of others like her, this is their chance.