A controversial treatment for chronic fatigue syndrome (CFS) called the Lightning Process can help children get better, a trial has shown, much to the surprise of the doctor who put it to the test.

One in every 100 children of secondary school age has CFS, also known as ME, and it can wreck their lives. Those affected miss a year of school on average, many of them getting to classes on just two days a week. Half are bedbound at some stage.

Esther Crawley, a paediatrician and professor of child health at Bristol University, runs the biggest centre for children with CFS in the country, seeing about 400 patients a year. She embarked on a trial of the commercial Lightning Process because the children she cares for and their parents were interested in it.

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“Every single week in my clinic, children came up to me and said we want to know about the Lightning Process. People have told us to try it. Should we have it?” she said. “It was fascinating at the time. We heard about people getting better and people getting worse. I was kind of curious. I never expected that it would work.” If anything, said Crawley, she set up the trial in a way that would make it harder for it to be shown to work.

The Lightning Process is a commercial programme, developed from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. The course costs around £620. It is billed as training rather than therapy and lasts three intensive days.

The trial was relatively small – 100 young people aged 12 to 18 took part, half of whom had the usual treatment that Crawley’s team at Bristol’s Royal United Hospital give patients, while the other half had that plus the Lightning Process training as well.

Results published in the journal Archives of Disease in Childhood show that children who went through the Lightning Process programme were doing better than the others at six months and had improved still more by 12 months. Physical function, fatigue, anxiety and depression all improved more in the Lightning Process group. Those with the usual treatment – which includes improving sleep, exercise management and sometimes cognitive behaviour therapy – were spending more time in school at the end of a year, up to three days a week. Those who had the Lightning Process as well were in school four days a week.

“There are a lot of limitations,” said Crawley. “The main thing is to be absolutely clear to families that we don’t know if the Lightning Process works on its own. I’m not advocating people go out and get the Lightning Process. And we don’t know if it works for adults and we don’t know if it works for primary school-age children.”

The nature of the course put off many children from taking part in the trial. It involves three intensive days in a group of other CFS sufferers, which is hard for patients to contemplate. But, Crawley said, “This is a good news story.” More studies are needed before it can be considered by the NHS, but it offered real possibility for some children.

The Lightning Process was developed by osteopath Phil Parker in the late 1990s and is offered for a range of conditions. Its use in CFS has been controversial among those highly vocal activists who resist any attempt to suggest the disease is psychological rather than physical. Parker claims that the Lightning Process works by teaching people to use their brain to “stimulate health-promoting neural pathways”.

Those who have been through it say they are taught that negative thoughts and emotions can affect their body’s health. In the only other study done on the process, an analysis of the experiences of a handful of young people from the Harvard School of Public Health, one described using a physical gesture to stop the negativity of the mind. “Whenever you get a negative thought, emotional symptom, you are supposed to turn on one side and with your arm movements in a kind if stop motion, just say STOP very firmly and that is supposed to cut off the adrenaline response,” the young patient said.

Crawley says CFS is caused by a biological response, usually to a viral trigger. Children can be genetically susceptible and do not recover fully after an infection. “CFS is really common and uses up vast amounts of NHS resources,” she says.

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But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better. Crawley was attacked for launching the latest trial, as she has been in the past.

“At medical school people are told not to go into [CFS]. As researchers they are told not to go into it because you get so much abuse,” she said. “We still have a condition which is really common and really disabling and children begging for treatment and begging for answers, but people won’t go into it.

“When I think about leaving, which I do a lot, I think about the children who come to my clinics who have miserable lives because current treatment is not effective enough. We have to do research.”

The ME Association said it had “spoken out robustly” about the trial since it first heard about it in 2010. It said it believed such a trial in children was unethical.

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS,” said its medical adviser, Dr Charles Shepherd.

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the Lightning Process believe that they are able to quickly increase their physical and mental activity levels. However, this is can be followed by a relapse or significant worsening of symptoms.

“Others who have gone through the Lightning Process treatment report that they have spent huge amounts of money with no obvious benefit.”