6 months ago
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A former Team GB rower claims a treatment she underwent for long Covid leaves participants feeling "blamed" for being ill.
Oonagh Cousins was offered a free place on a course run by the Lightning Process, which teaches people they can rewire their brains to stop or improve long Covid symptoms quickly.
Ms Cousins, who contracted Covid in March 2020, said it "exploits" people.
However, the programme's founder denied it blames patients for their illness, saying that was completely at odds with the concepts of the programme
Ms Cousins had reached a career goal many athletes can only dream of - being selected for the Olympics - when she developed long Covid.
By the time the cancelled 2020 Olympic Games in Tokyo were rescheduled for 2021, Ms Cousins was too ill to take part.
When she went public with her struggles, she was approached by the Lightning Process. It offered her a free place on a three-day course, which usually costs around £1,000.
"They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely," the former rower said.
"I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill." She added: "They tried to point out that I had depression or anxiety. And I said 'I'm not, I'm just very sick'."
There is no official test or approved treatment for long Covid - an umbrella term to describe a range of different problems in different people.
For illnesses we cannot yet directly test for, there is a history of branding them as being driven by mindset. This is an ongoing challenge for ME patients, also known as chronic fatigue syndrome.
Multiple sclerosis and extreme pregnancy sickness were both, at one time, considered to be psychological.
But researchers now have growing evidence of what is causing long Covid - pockets of virus hiding in organs, signs in the blood of a disrupted immune system, and other measurable changes.
In secret recordings by the BBC, coaches can be heard telling patients that almost anyone can recover from long Covid by changing their thoughts, language and actions.
Over three days on Zoom, the course taught the ritual that forms the basis of the programme. Every time you experience a symptom or negative thought, you say the word "stop", make a choice to avoid these symptoms and then do a positive visualisation of a time you felt well.
You do this while walking around a piece of paper printed with symbols - a ritual the BBC was told to do as many as 50 times a day.
Prof Danny Altmann, a leading long Covid researcher, says such behavioural approaches disregard the "mass" of underlying damage in patients that can be measured in tests.
We've spoken to several people who did not get better - and even felt worse - after taking the course. There were some who said it did help them a lot, including one who said it made her feel better almost immediately.
In some cases the Lightning Process has encouraged participants to increase their activity levels without medical supervision, against official advice - which could make some more unwell, according to NHS guidelines.
Lightning Process founder, Dr Phil Parker, who's not a medical doctor but has a PhD in psychology of health, told us his course was "not a mindset or positive thinking approach," but one that uses "the brain to influence physiological changes", backed by peer-reviewed evidence.
The coach on the course we attended said "thoughts about your symptoms, your worry about whether it's ever going to go - that's what keeps the neurology going."
"Being in those kind of thoughts is what's maintaining your symptoms," the coach said. "They're not caused by a physical thing any more."
Dr Camilla Nord, a neuroscientist at the University of Cambridge, disputed these claims. She said the Lightning Process was "right that the brain can create symptoms of physical ill health" but added: "I think it's a wild claim to say there's nothing wrong with your body."
She believes there is a place for therapies that calm the body's stress response and adjust how people react to their symptoms. But even if some symptoms are based in the brain, she added, that didn't mean it was "something that you can actively change".
The coach on the course stressed the importance of avoiding negative thoughts and words like "pain" and "fatigue", claiming using them can continue symptoms.
"I'm afraid now we've strayed very, very far from neuroscience," Dr Nord says, calling this an "abuse" of scientific terms.
When we put these specific claims to Dr Parker, he said our questions seemed to be "informed solely by the rumours and misinformation" circulated by what he called "anti-recovery activists".
Long Covid support groups told the BBC's File on 4 programme that a lack of consistent services for patients is leaving people with nowhere to go.
Of the 90 trusts running long Covid services in England, about two-thirds (58 trusts) responded to Freedom of Information requests asking for details about their provision.
Of those, seven had at least one full-time doctor on staff. Eleven said they could not order tests or scans, while 24 said they could not prescribe drugs.
Prof Altmann, said: "There are hundreds of thousands of dissatisfied, desperate patients who never get to meet any doctor." He said the long Covid clinic coverage was "uneven" and had become a "postcode lottery".
Rachel Schraer investigates a controversial programme that claims to retrain patients' brains to stop or improve their symptoms.
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