Comic Miranda Hart has this week come under fire for suggesting she had found a cure to her chronic fatigue syndrome.
In her new autobiography the 51-year-old — best known for her BBC sitcom Miranda — recounted her three-decade battle that ‘left her bedbound and without joy’.
Initially diagnosed with agoraphobia, she later learned that undiagnosed Lyme disease had developed into chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME).
But in her book, the star suggests the causes and solution to conditions such as long Covid and ME can be found in ‘the brain’s heightened stress response’.
Critics have hit out at the Call The Midwife actor for peddling ‘pseudoscience’ and holding ‘dangerously outdated’ views on the conditions.
In her new autobiography the 51-year-old — best known for her BBC sitcom Miranda — recounted her three-decade long health battle that initially saw her diagnosed with agoraphobia
Responding to the backlash online, Hart acknowledged people had misunderstood that lessened stress was beneficial for her symptoms and that didn’t mean she had found a cure
in her book, the star suggests the causes and solution to conditions such as long Covid and ME are in ‘the brain’s heightened stress response’
Vikings star, actor Jennie Jacques, who developed ME in 2019, said: ‘Nothing personal at all @mermhart… I believe your intentions are in the right place but it would be irresponsible for me not to speak out.
‘With great power comes great responsibility. Eighty to 90 per cent of this narrative is dangerously outdated.’
Frances Ryan, a journalist and activist for people with disabilities also wrote on X: ‘Miranda Hart’s new memoir on chronic illness seems very well intentioned but this pseudoscience is worrying.
‘If you’re writing a book after you’ve recovered, there’s a particular responsibility to be accurate to readers who are desperate to recover too.’
Responding to the backlash online, Ms Hart claimed she’d been misunderstood.
She added that lessening stress was beneficial for her symptoms and that she didn’t mean she had found a cure.
Some also pointed out that in 2021, Ms Hart endorsed a book by Alex Howard called Decode Your Fatigue.
A quote from the comedian features on the cover: ‘A hopeful, practical book to help people move from debilitating fatigue to a purposeful, joyful life once again’.
Howard is the founder of the Optimum Health Clinic, which teaches courses in the Lightning Process and claims to ‘train the brain to ward off tired thoughts’, including treating conditions like ME, depression and chronic pain.
But in 2022, health watchdog the National Institute for Health and Care Excellence recommended that the Lightning Process should not be used by GPs.
‘The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS,’ says Dr Charles Shepherd, Medical Adviser for the UK ME Association.
Meanwhile, studies linking stress to these long term conditions have long been divided.
Research on long Covid is also still in its infancy.
Many people in the chronic illness community say they dislike the presumption that stress has caused their conditions, reporting that this stigma itself can cause stress.
There is currently no cure for ME and no single test that can diagnose it either.
Treatment instead revolves around therapy, lifestyle changes and the use of some medications to alleviate symptoms such as pain and sleeping problems.
According to the NHS, this can include cognitive behavioural therapy and advice on how to make best use of the energy you have.
One current study, led by Professor Chris Ponting, an expert in genome biology at the University of Edinburgh, aims to find the genetic causes of the condition.
Around 18,000 people with ME in the UK have given DNA samples to be analysed.
The comic officially received the diagnosis in lockdown and believes she contracted Lyme disease when she 14 after battling nasty flu like symptoms in Virginia
Professor Ponting told the BBC: ‘We hope the results will be able to tell us what is going wrong for so many people.
‘It is going to require a massive step-change across research and clinical practice for people with ME in the UK to be treated in the same way most other people with other diseases are treated.
‘They are forgotten, ignored and forsaken.’
It aims to signal where research should go next and accelerate steps towards diagnostic tests and new drug treatments.
If, for example, the genetics suggest the immune system is involved then a whole army of immunologists who have been working on other diseases can be brought on board, he said.
Symptoms of CFS vary per patient and over time.
The most common include an extreme physical and mental tiredness that doesn’t go away with rest as well as problems sleeping and with thinking, memory and concentration.
Other symptoms include muscle or joint pain, a sore throat, headaches, flu-like symptoms, dizziness and nausea as well as a fast or irregular heartbeat.
At its mildest, CFS sufferers can perform everyday activities with difficulty but may have to give up hobbies and social activities to rest.
The most severe CFS patients are essentially bed-bound and may full-time care unable to feed or wash themselves or even go to the toilet unassisted.
Charities say there are at least 240,000 people with ME living in the UK, though the exact figures are hard to pin down.
Around one in four of these people have severe or very severe ME, according to the charity ME Research UK.
Getting rid of a tick from your own skin is crucial to avoid the risk of infection, or contracting other diseases including Lyme disease. The NHS has a four-step routine to help safely spot and remove ticks
Lyme disease is a bacterial infection spread by ticks and can cause general flu-like symptoms, including fatigue, headache, swollen joints and a fever, which can last for a few weeks, but for reasons not yet understood, some patients suffer for years.
In her memoir Miranda said she struggled to deal with the ‘unnerving neurological symptoms’ she first experienced when she was 14.
She explained that it got ‘considerably worse’ when she headed into her 40s along with increasing fatigue and cell depletion.
Taking to Instagram this week, however, she said: ‘I am not saying I have found a cure or profess to know any medical in-depth knowledge for ME.
‘It’s a ghastly misunderstood condition and many don’t get any alleviation. Which hurts my heart.
‘I just believe reducing any fear when living with an illness can but help our quality of life.
‘But it’s very hard and I can only speak from my experience. It was research that speaks to all aspects of life too.’
She has now turned off commenting on her Instagram posts and shared a separate video in which she said: ‘I’m not a medic’.
In her book, the actor also revealed she found it easier to speak about her illness with others after long Covid hit the headlines during the pandemic.
‘After long Covid this is more understood; I can say I have long Lyme and people understand a little more easily,’ she wrote.
‘Year on year, the ‘chronic fatigue, ME, long post-viral condition’ bracket is getting more visible. I hope so, for it is a very real, severe, physical illness.’
Recalling when she received her diagnosis she also said: ‘I got off that Zoom call, pulled my laptop shut and sat there, still and aghast.
‘So many emotions, I was shocked, but I also immediately felt a deep well of sadness and disappointment.
‘For over three decades I’d KNOWN there was something wrong.
‘I recalled all the times I’d told different doctors, ‘I feel toxic and poisoned, or, It’s like I have flu every day but I don’t have a temperature’.
‘(It’s amazing how the body can sometimes literally tell us what’s going on.) I felt anger rising at the times l’d been told I must have agoraphobia.
‘I would try and treat it as such, when, as it turned out, it was the lack of energy and the extreme light and sound sensitivity that made my body crash when going out to be in any kind of activity or stimulating environment.’