Could ME be caused by too much adrenaline?
Twelve months ago, Leonie Gough was so ill she spent most of her time in her bed. The 17-year-old had ME, a condition which left her barely able to eat, let alone walk. She hadn't been able to go to school for three years and had to rely on a wheelchair.
A year later, Leonie now drives herself to college where she is taking her AS-levels – a two-hour round trip. She also works in a local dog kennels every weekend and enjoys a normal social life with her friends.
According to Leonie, this extraordinary transformation is down to a simple mind programme called the Lightning Process.
It's a highly controversial treatment. The human success stories describe the programme as ‘miraculous'; in the other camp are those for whom it has not worked, as well as sceptics who worry that the process has not been scientifically proven, while pointing to the high cost – around £500 – for the treatment.
ME is the lay person's term for an illness medical professionals call Chronic Fatigue Syndrome (CFS). More than a quarter of a million Britons have ME, and 25,000 of these are children under 16. Symptoms include extreme exhaustion and pain, although the severity can vary from person to person.
Exactly what causes ME is still a bit of a mystery. Researchers are investigating a number of possible links, including viruses, stress, pollution, changes in the nervous system and genetic disorders.
ME is recognised as a neurological illness by the World Health Organisation, and the National Institute for Clinical Excellence is expected to publish guidelines on its treatment in April.
Conventional treatments include painkillers, cognitive behavioural therapy (CBT) and anti-depressants. But there is no ‘cure', and patients can often struggle for years to find a treatment that makes any difference at all.
It was Leonie's mother Lorna who found out about the Lightning Process from an ME chatroom.
Her son Adam, now 17, had contracted the illness when he was 12; two years later Leonie also became ill. The family had tried various treatments – including acupuncture, CBT and hypnotherapy – over the years, but to no avail.
Once convinced to give the Lightning Process a try, Leonie had to undergo a wearing six-hour trip from her home in Essex to the ‘retreat' in Llansteffan in Wales for the treatment. Adam, who felt too ill to travel, stayed at home.
The Lightning Process was devised by Amir Norris, a therapist and counsellor, together with Phil Parker, principal of the European College of Holistic Medicine in London.
The principles are similar to those in neuro-linguistic programming (NLP) – a technique used to help change negative thoughts and behaviour patterns. It incorporates the ideas of NLP, but uses them to treat ME as a physical illness, relying on the power of the mind to affect the body.
Central to all this is the idea that adrenaline plays a key role in ME. Adrenaline is a hormone produced by the adrenal glands. It is released in response to anxiety, exercise or fear, producing what is commonly known as the ‘fight or flight' response – increasing the body's blood sugar levels in preparation for doing one or the other.
Amir talks about ME sufferers being caught in an ‘adrenaline loop' and sees breaking that loop as an important part of the training.
‘Generally, when healthy people get an infection, they release adrenaline to help deal with the stress of the illness,' he explains. ‘The adrenaline levels then return to normal. But in some ME sufferers, the adrenaline continues to work overtime and it is this constant flow of adrenaline that causes the exhaustion.'
Although Amir and his colleagues have not conducted any studies on the adrenaline levels in ME patients, it is generally accepted that constantly raised levels of the hormone are bad for your health, and have been linked to a range of problems including high blood pressure and ulcers.
The day after she arrived at the retreat, Leonie sat on a chair in her room while Amir talked to her for three hours about the training programme, explaining what is involved and how it works.
The first step is to recognise the thoughts that trigger the stress reaction, such as: ‘I'm worried that I'm not going to be well enough to go out shopping,' or ‘I'm never going to get my school work finished.'
To stop the triggering thought, the ME sufferer must firmly say: ‘Stop,' to themselves half way through the thought. This physically ‘cuts off' the stress response to stop it from progressing.
The next step is to create new, more positive thought patterns to replace the negative ones. For example, instead of worrying about not being able to do something because you will feel ill, you are taught to imagine feeling well and being able to do that activity.
The theory is that this creates new connections in the brain, which then stimulate the production of endorphins – feel-good brain chemicals – rather than stress hormones such as adrenaline.
The patient has to continue using the process repeatedly until their ME symptoms have abated. To help the process, special cards with key words – such as ‘the present moment', and ‘stop' – are placed in a pattern on the floor. The idea is that stepping on the cards reinforces the thought process.
You start with the ‘present moment' card (which represents the need to stay in the here and now, and not dwell on fears about the future), then move on to the ‘stop' card to cut off the triggering thoughts. As you perfect the technique, you no longer need to step on the cards but can visualise them until it becomes second nature.
‘It sounded a bit weird at first,' says Leonie, ‘but after practising over the weekend, it really worked.'
Within two days of her treatment, she was walking unaided along the beach with her mother. ‘I telephoned my father and said: "Guess what I'm doing?" He was so gobsmacked he couldn't speak for five minutes,' she says. She then folded up her wheelchair and told her mother: ‘I will never use this again.' One year on, Leonie is still feeling great.
Three months after his sister's recovery, Adam also made the trip to Wales. He is now back at college and learning to drive.
But the Lightning Process does not work for everyone. As well as the success stories, ME chatrooms feature the ‘failures' for whom the approach has not been effective.
Mary-Jane Willows, chief executive of the UK Association of Young People with ME, believes it's important to exercise caution before embarking on unproven treatments.
‘While we have heard of members who have been helped by undertaking the Lightning Process and are thrilled for them, we are aware of others for whom the outcome was less than positive. We cannot recommend this therapy or others for children where there is no clinical data or research available.'
Dr Neil Abbot, director of operations at ME Research UK, is sceptical about adrenaline playing a role in the condition. ‘We should like to see some evidence that there is an adrenaline rise in ME sufferers, and if there is, whether lowering adrenaline induces a "lightning" cure,' he says.
‘The only thing that will create general acceptance of the principles and treatment techniques applied by the Lightning Process will be large-scale tests.'
But while the jury is still out in the medical world, among those for whom it has worked there is absolutely no doubt.
Linda Morgan, 61, suffered with ME for 43 years. At 18 she was a professional rider but fell ill with glandular fever and never recovered. She heard about the technique on BBC Radio 2's Jeremy Vine Show.
‘For 43 years I had tried absolutely everything, different kinds of alternative and conventional medicines. Nothing worked. So I took myself to Wales with very little hope.
‘I remember sitting with Amir and very suddenly feeling a coolness at the top of my head that went down my spine and all through my body.
‘The next morning I woke up feeling refreshed and well for the first time in 43 years. And I am still well today.'
For more information about the Lightning Process, call 020 8341 9800.