Buzzfeed News, 30 December 2017, by Tom Chivers.
A recent scientific trial has led to acrimonious debates over chronic fatigue syndrome, aka ME, and boosted interest in a secretive therapy that some call a “cult” and others call a “miracle”. BuzzFeed News investigates.
The publication of a new scientific study does not usually bring about accusations of libel, alleged death threats, and unprofessionalism.
But in the last three months, a trial into a strange, divisive therapy for a mysterious illness has sparked exactly that – as well as boosting interest in the therapy itself, the Lightning Process, a controversial, much-hyped, and much-despised programme that devotees describe as a miracle and detractors call a pseudoscientific cult.
The Lightning Process has gained attention for claiming to alleviate chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), an unexplained and devastating illness. It manifests as not simply profound tiredness but also crippling pain, especially after exercise, and a near paralysis of muscles that can persist for days at a time. There is no known cure. It can last for years, or decades, or the remainder of a life.
Sufferers are often confined to their rooms or beds, unable to walk. It often appears to follow a viral infection, but no one knows why, or what causes it; it is diagnosed only when the symptoms persist for a period of months and no other cause is found.
Sophie Waterhouse was diagnosed with CFS/ME in 2010. First she had glandular fever, or mononucleosis, an unpleasant viral infection that is often followed by several months of profound fatigue. She was 30 years old at the time, and hugely active.
“I refused to accept I was ill,” she told BuzzFeed News. “I carried on doing triathlons and competitive racing. I carried on working hard and partying hard.”
And then, suddenly, she couldn’t. “I couldn’t move,” she said. She had to quit her job in recruitment. “I had a really successful job, a really successful career,” she said.
Less than a year later, she began the Lightning Process, a private three-day course costing several hundred or sometimes thousands of pounds. Its practitioners are keen to say it's not a treatment but a training, and – in some cases – it has apparently removed the symptoms of CFS/ME altogether.
More than 20,000 people have used it worldwide, according to its practitioners. Endorsements from the MOBO-winning singer Laura Mvula and the former England rugby player Austin Healey are prominent on the programme’s website; elsewhere it links to a glowing report by the TV presenter and Childline founder Esther Rantzen, who says it rescued her daughter from 14 years of the disease. (Rantzen also used it herself to prepare for her appearance on the reality show I’m a Celebrity, Get Me Out of Here.)
The Lightning Process was developed by a British man, Phil Parker, in the late 1990s. Parker is a former osteopath and hypnotherapist who was once a teacher on a course that claimed to teach people how to heal illnesses using spirit guides and tarot cards, but who is now doing a PhD in health psychology.
The process, or its practitioners, have made some dramatic claims about its effectiveness. At least one practitioner’s website used to say that it could “help you to completely recover permanently” from CFS/ME with “no possibility of relapse”, and that patients can “achieve full recovery no matter how severe your symptoms are”. Those claims are now gone but are visible on web.archive.org, and were recorded at the time by the charity Invest in ME.
Parker’s own websites apparently used to make similar claims. According to the charity 25% ME Group, Parker’s website once said the Lightning Process allowed patients “to automatically, easily and effectively stop those thought patterns” that he said were “always present” in ME.
And lightningprocess.co.uk, which was described as Parker’s personal website, said it contained “stories of those who inspired me with how they used the mind body connection to get over ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders and much more”.
However, none of these claims are still available on the internet. The Advertising Standards Agency (ASA) issued two rulings against Parker and his companies in 2012 and 2013, saying his websites gave the misleading impression that the Lightning Process could cure or treat CFS/ME and other conditions.
Other Lightning Process practitioners have changed the claims on their websites following complaints to the ASA – the most recent was just last month – that the ASA either upheld or resolved informally.
Parker told BuzzFeed News the claims on his websites were “quite reasonable – we think the Lightning Process may help some people with chronic fatigue, some of the time”, and said it was based on a survey of patients that found that 81.3% of patients had improved, and anecdotal stories.
The study, known as the SMILE trial, was widely publicised, mentioned on BBC Radio 4’s flagship news show the Today programme and in several newspapers. One charity, the ME Association, told BuzzFeed News it had seen a spike in discussion about the Lightning Process in the wake of its publication.
But far from ending debate about the secretive therapy, the trial inflamed it. Not one of the CFS/ME charities – Action for ME, the ME Association, the 25% ME Group, ME Research UK, and Invest in ME – BuzzFeed News has spoken to welcomed its findings; they were all deeply wary. Several experts expressed profound concern over how the trial was conducted.
BuzzFeed News spoke to the researcher behind the trial – who says she has had death threats as a result – and five people who have used the Lightning Process. Their experiences of it differed dramatically…
This in-depth report includes personal accounts from people with M.E. who have attended Lightning Process courses, more about what these courses actually comprise, details about the controversial SMILE Trial and comment from its author Dr Esther Crawley, and critical comment from Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and others.