ME: Lightning cure or a flash in the

pan?

Lightning striking pointing finger Getty Images Steven Hunt/Getty Images

Patrick Strudwick
February 22 2011 12:01AM

As a new study into ME treatment triggers fierce

debate, a former sufferer claims the process saved his
life
My memories of 2007, the year stolen from me by ME, have become like a series of
video clips. Each little MPEG is a bit crueller than the last. There’s the one before the
diagnosis where I’m trying desperately to walk through a Tube station but my legs give
in leaving me clinging to a railing. I start weeping, suddenly overwhelmed by the
realisation that my body is morphing into that of a 90-year-old’s. People stare.

Then we jump a few weeks to the one of me in bed with the curtains closed at 2pm
because, like everything else, daylight has become intolerable (light hurts. Sound hurts.
Breathing hurts). There are some of me where I’m unable to brush my teeth. Several
where I’m too weak to eat. And then there’s the one that always gets me — lying under a
blanket in the garden watching my retired mother kneeling on her arthritic joints. She’s
bashing at the soil with a trowel to plant flowers in the hope that they will make life
seem bearable for me. I am 30 years old.

In a few months I had gone from being a busy journalist, darting about London, to an
invalid, signed off sick, barely able to get out of bed. I could not manage more than a
few steps before acrid pain scorched my muscles. In hindsight, my physical breakdown
had not emerged from nowhere. During those months my partner had walked out. I
then had to move house. My grandmother had died. And then, for extra fun, I had an
(albeit benign) intestinal tumour removed.

Being a prolific “cyber-chondriac”, I had been warned by Google about the pain and
exhaustion that I might suffer, so I persuaded my GP to refer me to a chronic-fatigue
clinic. A few weeks later, a specialist at St Bartholomew’s Hospital, London, diagnosed
ME.

Last week, those memories taunted me once more while reading the results of the
biggest study so far into the condition. The report, called PACE, published in The
Lancet, found that psychological rather than pharmacological treatments are the most
effective. It cited cognitive behavioural therapy (CBT) and graded exercise treatment
(GET) — where patients are encouraged to gradually build up their activity levels — as
the overridingly successful interventions.

The ME Association responded by saying that the study was “extremely worrying” and
that, “this is not a good day for people with ME”.

Action for ME said that the findings contradicted its own research. Both organisations
believe that because ME has been categorised as a neurological illness a cure must
come from a pharmacological/biological breakthrough.

Reading their responses, I wanted to cry with frustration. Why? Because I know that
what cured me was an entirely psychological treatment. I know, too, that it worked
almost instantly. After a few hours of it I went on a long bike ride. The treatment is
called the Lightning Process (because of the speed at which it works). It’s a three-day
seminar that fuses elements of CBT with neuro-linguistic programming (NLP), life
coaching, osteopathy and hypnotherapy. You learn, essentially, how to transform
destructive thoughts into constructive ones. In doing so, the physical symptoms
disappear, because — goes the theory — they result from an ever-looping over
production of adrenalin (caused by the unhealthy thoughts), which devastates the
central nervous system.

The British osteopath, Phil Parker, devised the Lightning Process (LP) in the late 1990s.
I’d tried other things — supplements and a treatment called the Perrin Technique —
but nothing had worked. Then, while researching different approaches, I came across
LP.

The seminar took place in a converted house in Crouch End, North London (those too
ill can be visited by an LP practitioner). There were six of us in the small, bright room,
including two women who’d been bed-bound for 20 years. Also with us was the
discarded debris of success: disabled parking badges and walking sticks left behind by
former alumni.

The first step was learning to identify any thought that isn’t “life-enhancing”, such as “I
can’t walk”, or, “I’m exhausted”. As soon as that thought occurs, you shout “Stop”,
jump to the side and put your hands up as if intervening in a bar brawl (you can do this
in your head if you’re too ill to move). Then you learn how to replace the thought with a
healthy one. This begins with a self-coaching process, where you play both coach and
student: “Well done ... you can do this ... what is it that you want?”

“I want to feel energetic.”

“How are you going to achieve this?”

“By taking myself back to a time when I felt full of energy.”

Here you recall a memory of when you felt incredibly energetic and relive it as vividly as
possible, thereby accessing all the energetic feelings. The adrenalin loop is interrupted.
We also learnt to change the passive language in our heads. A thought such as, “I’m
really anxious”, becomes, “I’m doing anxiety”. Because you tell yourself that you are an
active participant in it, you can therefore “do” something else. Realising that I had a
choice changed my life.

There are visualisations, too. When, for example, you approach seemingly
insurmountable stairs, you imagine yourself bouncing up them like an excitable puppy.
There are many more techniques besides these but this forms the basis. By the third
day, the bed-bound women had gone shopping.

To constantly interrupt destructive thoughts requires Samsonian determination but it

becomes increasingly automatic. By the following week I was working again, happier,
more positive and with more energy than I’ve ever had — all for £600. It has remained
thus.

More than 2,000 people a year say that their lives have been transformed by the process
(including Esther Rantzen’s daughter, Emily Wilcox, and the wife of the rugby player,
Austin Healey). In 2009, an independent study by the Brighton and Sussex Medical
School reported that 80 per cent of those who tried it found it helpful. The NHS is now
conducting pre-trials to study its efficacy in adults and children.

But it remains highly controversial. Indeed, the aforementioned ME charities don’t

recognise it as a viable treatment and continue to campaign for medicinal cures. When
I ring the ME Association’s honorary medical adviser, Dr Charles Shepherd, he calls the
process a “three-day brainwashing session”. While he doesn’t believe that you can cure
physical conditions with psychological treatments, he concedes that “you can use
psychological techniques to help people cope with their symptoms — you can help to
relieve pain”.

Action for ME tells me, via e-mail: “The Lightning Process ... benefits some but either
has no effect or carries risk of harm for others.” Despite this, I remain convinced. Not
just because I’ve experienced the process but because I’ve witnessed others recover, too.

Jenny Kumaran, who attended the course with me, was one of them. “I was at rock
bottom when I did the LP,” she says. “I’d been housebound for a decade with my
parents looking after me. The process didn’t just make me well; it helped in other areas,
such as giving me more confidence. I’ve never looked back.” She went on to train as an
LP practitioner. There are now dozens of them around the UK, as well as in the US,
Australia, Norway and Sweden.

But is there a scientific explanation? I contact Dr Rajesh Munglani, who is a consultant

in pain medicine at West Suffolk Hospital. He has treated people with ME and
fibromyalgia, and has attended a Lightning Process seminar to observe the techniques.

“ME or CFS (chronic fatigue syndrome) is a constellation of symptoms and often we

don’t know what causes them,” he says. “It can be a viral trigger, a trauma, an accident
or any number of things. But what happens is that when the body gets better the
patient’s brain continues to focus on the symptoms. The result is a behavioural
response to those symptoms. For example, ‘I’m tired, so I won’t do anything’. What you
have to do is try to switch off that mechanism.

“The hardwiring in the brain can be changed because it responds to different stimuli.
But it’s hard for people to accept that there’s a psychological way of controlling
symptoms. For that reason lots of people aren’t suitable for the Lightning Process.”

Since attending the seminar, Dr Munglani has started referring patients that he thinks
might respond to the process. “I’ve seen great results,” he says. “They’ve come off
opiate-based medication, for example. This is because the process has optimised parts
of CBT, NLP and self-hypnosis and put them all together. The patient stops focusing on
the symptoms and focuses on what they’d like to do instead.”

Dr Munglani welcomes the findings of the PACE study. “They underline the importance
of combining the physical, psychological and behavioural elements in effective
treatment. You can’t just keep looking for a physical cause.”

Others have serious reservations, however. Malcolm Hooper, emeritus professor of

medicinal chemistry at the University of Sunderland, has published a critique of the
report, concluding: “The results of the PACE trial may mean that patients who have
genuine ME, as opposed to chronic fatigue, will continue to be denied appropriate
investigation and treatment.”

Meanwhile, the search for a cure continues. Last year hopes rose when researchers at
the Whittemore Peterson Institute, Nevada, found that 68 out of 101 ME sufferers were
carrying the XMRV retrovirus. But other virologists were unable to replicate the
findings.

For me, the answer is already out there. The Lightning Process taught me how to drag
myself out of a deep ravine; it was the most empowering experience that I’ve had. I
learnt that however real and awful the symptoms are, they can still be bypassed,
diverted and discarded. But questions about its efficacy are no surprise. In the West
we’re taught to be passive recipients of medicine. LP requires a totally active
engagement, taking constant responsibility for one’s own wellbeing.

There’s nothing special about me; I was just determined. It feels distinctly alien even
thinking that I once had ME. But when I do let those video clips resurface I’m
convinced of one thing: the Lightning Process saved my life.

Focus on ME Coping strategies

The outlook for most people with chronic fatigue syndrome/ME is good — as many as
nine out of ten children and half of all adults make a full recovery — but incorrect
management will prolong the illness. Modern care tends to centre on advice and
support — rather than pills and supplements — so approaches such as the Lightning
Process reflect current thinking, although there is far more to dealing with CFS/ME
than “mind over matter”.

I find that the simplest steps often help the most. The trick is to avoid the bust-boom
cycle where people do a lot on days when they feel good and take to their beds on days
when they feel awful. It is only natural to overdo it when you are feeling better but
payback later is inevitable so the trick is to pace yourself across the week.

Split the difference between what you can do on a good day and a bad day, and do that
every day. And remember that “activity” requires both physical and mental exertion so
includes things such as working on the computer, homework, housework, commuting
and so on. Once you have got the hang of pacing yourself, you can try — gradually — to
increase your activity levels each week. If your symptoms worsen then you need to cut
back.

The other crucial strategies are rest and sleep. Try to have five minutes’ rest every hour
throughout the day. Don’t doze, just lie down and chill out. And while it may be
tempting to take to your bed if you feel tired, too much sleep can, paradoxically, worsen
fatigue. Adults should limit their sleep to between seven and eight hours a night. This
may mean staying up even when you feel washed out and setting your alarm even when
you feel like a lie-in.

Lastly, don’t underestimate the psychological repercussions of CFS/ME. Feeling awful

for months on end can dampen the spirits of the hardiest person and is only likely to
accentuate symptoms.
Dr Mark Porter

© Times Newspapers Ltd 2011 | Version 1.11.0.16 (15778)

Registered in England No. 894646 Registered office:
3 Thomas More Square, London, E98 1XY
RSS | Site Map | FAQ | Classified advertising | Display advertising
Privacy Policy | Syndication | Terms & Conditions | Contact us