Positive Health Online

Introduction

The purpose of this article is to provide an explanation of the theoretical model and practical processes underlying both appropriate and inappropriate use of NLP in the treatment of patients with ME/CFS.

The timing of this article has been influenced by recent publicity about a research paper by Crawley et al[1] which purports to supports the use of the Lightning Process™, in addition to Specialist Medical Care, to treat ME/CFS in children between the ages of 12 and 18.  The Lightning Process™ is described by its developer as based on Osteopathy, NLP and Life Coaching. 

There has been a recent decision to review the NICE Guidelines for treatment/management of ME/CFS, and it is not unreasonable to speculate that evidence for the effectiveness of this trade-marked treatment might be used to support recommending its use, paid for by the  NHS, in a revised Guideline. The use of psychological therapies in ME/CFS, which the recent Report by a Committee of the US IOM[2] describes as a serious, complex multisystem disease, not psychogenic, is naturally a cause for controversy.  

ME/CFS is generally recognized as an illness in which exercise “exacerbates symptoms”, and it has always seemed illogical to prescribe exercise as a treatment.[3]

The first and last sentence of this article’s abstract epitomize this paradox::

“Severe exacerbation of symptoms following physical activity is characteristic for chronic-fatigue syndrome (CFS) and fibromyalgia (FM). These exacerbations make it understandable for people with CFS and FM to develop fear of performing body movement or physical activity and consequently avoidance behaviour toward physical activity”.

Quote from The Doctor's Dilemma published by Stonebird

In words of one syllable, people who have ME/CFS avoid physical activity because it is followed by severe exacerbation of their symptoms.  Avoiding something that makes you sicker seems sensible, and one might expect a responsible physician to recommend [avoiding] it.

But no.

“Individually tailored cognitive behavioural therapy plus exercise training, depending on the patient's classification as avoiding or persisting, appears to be the most promising strategy for treating fear of movement and avoidance behaviour toward physical activity in patients with CFS and FM.”

We want our patient to overcome his (justified) fear of physical activity, and suggest a therapy aimed at changing his belief (in the fact that physical activity makes him sicker), and add ‘exercise training’. [3]

(Then we can take our diabetics, convince them that they don’t have diabetes, and help them practise eating sugar.  Lung cancer patients can be taught to overcome their fear of smoking.  Children can be helped to overcome their fear of running out into traffic.  Why should these people limit themselves just to ME/CFS when there are so many other possibilities for applying this approach?)

Now that the US IOM have further asserted that the defining feature of this disease is that “exertion, of any kind – physical, cognitive or emotional – may adversely affect many organ systems”, it seems that any  management pathway intended to “increase activity levels”  must be harmful.[2]

Nevertheless, the UK medical community seems determined to persist in such recommendations.  A recent decision not to review the NICE Guidelines was reversed following a patient petition to have the NICE Guidelines reviewed which gained more than 15,000 signatures.  However, the experts who will be consulted have not been named, which is unusual. The advocacy community wonders whether this is because the panel will consist, as in the past, mainly of people who support the psychiatric model (including, possibly, Prof. Crawley), rather than other medical researchers in the field.

The author has no intention of entering into the current controversies which are taking place in reference to this specific piece of research, or Professor Crawley’s professional and media activities.  These can be followed elsewhere.

http://www.virology.ws/2017/12/13/trial-by-error-the-crawley-chronicles-resumed/

http://www.virology.ws/2017/12/18/trial-by-error-my-questions-for-the-science-media-centre/?t=1&cn=ZmxleGlibGVfcmVjc18y&refsrc=email&iid=9d391e77ace84a93b9348ee13cf63db3&uid=96770240&nid=244+276893704

http://www.virology.ws/2017/12/23/trial-by-error-bristols-complaint-to-berkeley/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.rlX64026v#.voENxJGNm

http://www.virology.ws/2018/01/02/trial-by-error-the-school-absence-study-revisited/

The principles of NLP form a significant element in the design of the Lightning Process. As an experienced and successful psychotherapist qualified in NLP,  I provide a few brief examples of its approach, how it can help, and the dangers of misuse. The reader can test these and come to his own conclusions.

A more detailed description of NLP can be found in my article NLP: Cult or Cure - Neither, Actually, which contains references to the original and subsequent full accounts.

A more detailed account of ethical and unethical use of NLP for ME/CFS  is set out in my article ME/CFS: Ethical and Unethical Uses of NLP.

With the information I provide (and references to further sources) I hope that the reader will feel able to make his own judgements about the relevance of the Lightning Process™ to the treatment of patients with ME/CFS, and especially the possible effects when applied to adolescents and children

My Qualifications for Writing this Article

In Mental Health, and Specifically in NLP

• I am a retired psychotherapist, accredited by the UKCP (United Kingdom Council for Psychotherapy) as a Neurolinguistic Psychotherapist for more than twenty years; 
• My qualifications in NLP include Practitioner, Master Practitioner, and Human Design Engineering, studied with Richard Bandler, one of the two originators of NLP; 
• I was Chair of the Psychotherapy and Counselling Section of the ANLP (Association for NLP)  in the run-up to its becoming affiliated with the UKCP, and did the final edit on the document which formed our successful application to the European Association for Psychotherapy for NLP to be accepted as a psychotherapeutic modality in Europe;
• I have worked in mental health in the Humberside Social Services and latterly as a private psychotherapist, since 1971. While with the Social Services, I set up and ran a centre for people with mental health problems. Then, as Principal Officer Health for Scunthorpe and Grimsby, I was involved in planning transfer of mental health clients from NHS to Social Services care; 
• I was a member of the HSS Committee designing the ten-year-plan for mental health services going forward into the 90s, and presented it to the Humberside County Council, attracting £1,000,000 funding for the proposed services.

In Relation to ME/CFS

• In April, 1986, I fell ill with what I learned that summer, was ME/CFS.  Fortunately, the ME Association advice at the time followed Ramsay’s recommendation, to get as much rest as possible, and to keep exertion within two-thirds of ones perceived energy level.  Thanks to an understanding doctor, family, and colleagues, and the nature of the Principal Officer Health post (attending meetings and writing reports), I was able to continue working in the Social Services Department for another few years before retiring into private practice.  This good fortune keeps me still able to write, on behalf of my more disabled fellows, and I feel it lays on me a moral responsibility to do so;
• Before I retired, I spent a year as the first Information/Policy Officer for HIV in the Social Services Department. This required learning as much as possible about scientific, medical and political developments concerning this retrovirus;
• This study equipped me well for learning as much as possible about the biomedical aspects of ME/CFS, and its implications for care; 
• The articles I have written on this subject, along with my two books, ‘A Beginner’s Guide to ME/CFS’ and (co-authored with Les Simpson, Ph.D.), ‘Ramsay’s Disease (ME)’ can be found on my website, www.nancyblakealternatives.com. 

What is this NLP?

Richard Bandler calls it “an operating manual for the brain”, and adds that if you aren’t running your own brain, someone else will be - advertisers, politicians, or other people in your life.

Language Patterns. Here is a practical example of the use of NLP language patterns in teaching piano:  Approaching a difficult passage.....if I say to the pupil “this is the hard part”, it is true, but unhelpful. The word ‘hard’ creates anxiety and increases physical tension, both of which make learning more difficult. If I say “this is the part that isn’t easy, yet”, it is stating the same information. But the word ‘easy’ suggests relaxation, and the word ‘yet’ implies confidence that it will become easy. I have conveyed the same information, but one set of words increases tension, the other encourages relaxation and an expectation of success...making learning much easier.

Submodalities.  Have you ever described a memory as ‘fading’?  The memory used to invoke strong feelings, now your mental  picture of it seems further away, not so bright coloured, a bit in soft focus..and the feelings it used to bring up are not so strong. 

We think that only time can bring this about.  But suppose there is something that is niggling right now - it’s not important, and not worth bothering to do anything about, it’s just annoying.  Maybe you could try calling up the mental picture...which is bright and right ‘in your face’....see if you can mentally move the picture further away, tone down the colours, put it a bit out of focus....now are you feeling less bothered?  (If you protest that you can’t just move a mental image around, Bandler would respond ‘It’s your brain!’)

Representational systems/eye movements: You could test this right now...concentrate on feeling the temperature of the air around you.  As you are doing that, what is the angle of your defocused gaze?  Notice that at the point where you are most aware of the sensation.  I’m guessing that you will be looking down and to your left.  But I could be wrong. We’re just trying something out here.

Now try to remember what your kitchen looks like.  As the mental picture becomes clear, now what direction is your gaze?  I’m going to guess that it is up and to your left.  Again, I could be wrong.  This may not fit at all with your experience.  (Experts have proved that this is nonsense; who am I to question.)

If, however, your experience did match with my guesses, I will say that for most people, looking up and to their left will help them call up remembered visual images...up and to the right is when you are trying to imagine something you haven’t seen yet.

Looking down and to your left helps you to get in touch with feelings – sensations and emotions.  Looking down and to the right puts us in touch with the (usually self-critical) stream of chit-chat that forms a backing track to our lives. 

Suppose you suffer from exam anxiety (who doesn’t!).  Be a mountain climber, don’t look down. Keeping your gaze upward while you are thinking will help you remember the images of your notes, charts, calculations.  And it will keep you out of anxiety and internal recriminations about how you should have studied more.

Even quite depressed people...depression involves feeling bad and being ridiculously self-critical...can be very surprised to discover that as long as they keep gazing at the point where the wall meets the ceiling, they can’t feel depressed at the same time...in order to get back to depression, they have to let their gaze drop.  It’s a shock to the system, not to be able to feel depressed.

What about a level gaze?  Usually auditory..sounds, words, music.  Our traditional  ‘shifty-eyed foreigner’ is trying to remember the word in English (looking left), then figuring out how he’s going to say it (looking right).  Try to remember the lyrics to that song..which way does your gaze go?

This is a taste of NLP.  You are the one to decide whether it ‘works’.  We don’t have to argue about whether it’s ‘true’.

Ethical or Unethical?

Now suppose you have a broken leg, and I am so good at NLP trance induction that I can stop you feeling the pain. 

If I do this, so you start walking on it and don’t bother to get it set and in a cast, you are going to end up with a terribly deformed and constantly painful leg.  Ethical?

IF I do this to help you and the doctor have an easier time while he sets it correctly and puts it in plaster that is holding it precisely in the right position, I’ve improved your chances of a full recovery.  The same process, used ethically.

If your broken leg has completely healed up, but you are still a bit scared it will hurt to walk on it, it is appropriate for me to offer you reassurance that it won’t hurt, and encourage you to try walking on it. (Rehabilitation after successful treatment.). If it’s not healed, and still hurts and is vulnerable to damage, rehabilitation will be harmful.

There is an NLP process called an ‘ecological check’.  This is to make sure that whatever process you are using to help with a particular problem or goal is not going to do harm in some other area of the person’s life. (Don’t cure a snake phobia until you’re sure your client knows what a poisonous snake looks like.)  In a medical situation, this means making sure that what you are doing is based on an an accurate understanding of the medical situation.  If you use NLP techniques to get rid of a headache that is caused by stress, that will probably be fine.  If you use NLP techniques to get rid of a headache that is caused by a brain tumour, your ‘help’ may mean the patient doesn’t bother to get it properly diagnosed, and could cost him his life.

If you have a viral illness, your immune system needs all your energy to fight it.  It is appropriate for me to reassure you that it is fine for you to go to bed, you have a good chance of getting better more quickly if you rest.  If you feel guilty about it, it is appropriate to help you get rid of that guilt by telling you that it would actually be more harmful to go back to work and risk everyone else catching it than for you to stay home and rest.

It is not appropriate for me to tell you you’ll be fine, just keep on doing your normal stuff, don’t give in to it.  This will prolong the illness and risk making it worse.

The judgement about the use of NLP for the treatment of ME/CFS hinges on whether we believe the psychiatric model…that the original viral illness is completely over, and exercise is avoided because of irrational fears…or the medical model which observes the continuing relapses following exertion and concludes that this is evidence of a continuing latent infection.

Caveats about the Lightning Process™

I have not personally engaged in the Lightning process,  My information about it is gained from the description given in the Crawley article[1], podcasts on the website which advertises it, discussion with patients who have engaged in it, and Facebook reports about it.

In the research paper, it is said to involve some previous reading about it, then three four-hour sessions on three consecutive days, and some follow-up phone calls.  The sessions consist of being given information, including about the ‘mind-body’ connection and the use of language to reinforce the effects of taking responsibility for one’s health by thinking positively, some goal setting, and some practical exercises.  Goals are also set for exercises at home. 

Based on the information I have been given, and my knowledge of NLP, I assume that the emphasis will be on how one’s beliefs, presuppositions, language patterns can affect one’s physical health.  This shifts responsibility for the illness onto the patient’s own beliefs, presuppositions and language patterns, denying the role of an ongoing pathogen, or insisting that the ‘mind-body’ connection gives your beliefs the power to overcome it.

It appears that patients are told that they must tell themselves and others that they are in full health, regardless of how they actually feel.  They must reinforce this by giving up any physical aids they have, and begin behaving as though they are well.  If their beliefs are strong enough, if they practise the new beliefs and behaviour with enough conviction...taking responsibility now for their recovery....they will fully recover.  I understand that the children are also told that the treatment won’t work if they tell anyone how it is done. 

Patients I have spoken with who have completed the Lightning Process™, and others who have given accounts on Facebook confirm what I would have expected from my own knowledge of NLP and my own experience of ME/CFS.  Great enthusiasm is generated, and in the early euphoria, many will do exactly as suggested (although many are unable to get through even the basics: for a person with ME/CFS, travelling to a place and then spending four hours in intellectual and physical exertion rapidly depletes their energy, and they become unable to continue almost immediately.)  Those who are well enough to be carried away by all the encouragement and positive energy may experience a temporary improvement.  As is typical of ME/CFS after exertion, a delayed but potentially severe and long-lasting relapse is likely to follow; this is likely to be proportionate to the amount of exertion that was used during the purported ‘recovery’.  Many report just such a sequence of events.

To give Prof. Crawley credit, the published paper[1] acknowledges that many children did not wish to enter the trial, and the fact that several who did [enter the trial] found responding to the follow-up questionnaires too challenging, and needed to be given more simplified forms of feedback.

Given that the outcomes were not based on physical measures of improvement or increased activity, but on answers to questionnaires about health and well-being...imagine that we are one of the children giving these answers.

You are a sick child who has just done a course in which you are told that your own thoughts and language will determine whether or not you will recover. You have been told that the treatment won’t work if you tell anyone what it was. An important part of the treatment is that you must say that you are well, no matter how you actually feel. You want the treatment to work, so does everyone around you, and especially the people who have provided the treatment.

Now you are asked to answer questions about your state of health, on a questionnaire which is meant to show whether or not the treatment has worked.

Is this child in a double bind?  Do you think this could have an effect on the outcomes reported in the research paper?

https://en.wikiquote.org/wiki/Through_the_Looking-Glass

http://www.drsallybasker.com/2015/04/six-impossible-things-before-breakfast/

ME/CFS, The Lightning Process™ and Believing Six Impossible Things before Breakfast

"Alice laughed: "There's no use trying," she said; "one can't believe impossible things."

"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."

Alice through the Looking Glass

The presuppositions of the Lightning Process™ are the ones which underpin Cognitive Behaviour Therapy and Graded Exercise Therapy:  that ME/CFS involves only thoughts and beliefs which, if changed, can result in recovery.  The patients’ belief that there is an underlying physical cause, and that exertion can do actual damage is considered to be false.  Treatment, therefore, can be successful if (and only if) this belief can be eradicated.

The Lightning Process differs from CBT/GET in that adds the use of NLP techniques to change beliefs and encourage the patient to give up his protective energy-conserving behaviour, his physical aids, and enthusiastically engage in exercise.

This would make it very effective indeed if the patient’s symptoms were caused only by unhelpful thought processes. 

It makes it potentially harmful if the patient’s problems are in fact caused by a pathogen which is stimulated by exertion, and which the immune system can only fight effectively if the patient rests so that all his physical energy is available for the immune system.

In relation to ME/CFS, what are the ‘impossible things’ one must believe (and what must one refuse to believe) in order to maintain the view that ME/CFS is, in Simon Wessely’s words, “nothing more than the belief that one has (ME)”?[4]

The IOM Committee on ME/CFS concluded, on the basis of the evidence they had considered, which included 9,000 research papers, that this was a serious, chronic, disabling disease, not a psychogenic disorder, and that this disease is defined by the fact that ‘exertion of any type - physical, cognitive or emotional - may adversely affect many organ systems….’

According to this, there are 9,000 research reports which must be disbelieved in order to maintain the belief that ME/CFS is a mental health problem. 

The Committee on the NICE Guidelines for ME/CFS achieves this by dismissing all biomedical research publications as “small laboratory studies”. Apparently being done “in a laboratory” invalidates research results….and refusing funding for biomedical research does help to keep such studies small.

You have to believe that all the doctors who studied the various epidemics, some the most respected in their profession (Acheson became the Chief Medical Officer in the UK, and his policies concerning HIV are considered to have saved the UK from a major epidemic) were wrong about ME/CFS.

If you follow the conclusions of Elaine Showalter, the professor of literature with no medical training, whose book Hystories - Hysterical Epidemics and Modern Culture[5] helped shape public opinion about ME/CFS in the 1980s,  you have to believe that ME/CFS is caused by reading about it in the popular press and deciding that you have it.

This involves believing that a group of school-boys in one Iceland Village must have had exclusive access to English language press reports about ME/CFS and taken them very seriously. You also have to believe that this occurred in a particular barracks of young soldiers in Switzerland (but not elsewhere) as told in Ramsay’s Myalgic Encephalomyelitis and Post Viral Fatigue States. [6]

You have to believe Beard and McEvedy’s conclusion, on the basis of reading 15-year-old hospital notes (and refusing to interview any actual patients) that ME/CFS is just ‘mass hysteria’.[7]  Their conclusion rested on the similarities they found between these patients and two groups of school-girls who had had an episode of symptoms of what they also described as ‘mass hysteria’.  It is necessary to ignore the fact that the one symptom they did not, according to a table in the article, have in common was anxiety.  ‘Hysteria’ without ‘anxiety’.

(You also have to disbelieve the headmistress subsequently interviewed by Byron Hyde, who told him that the episode of ‘mass hysteria’ in her school was nothing more than a brief outbreak of diarrhoea and sickness.) The Little Red Book, A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome.[8]

You have to believe that people with no previous history of a mental health problem or of undue complaining about their health, and no preceding traumatic event other than a mild flu can become completely incapacitated within days, and continue to be so, simply because of negative thought patterns about minor symptoms.

You have to believe that intelligent, highly educated, successful professional people, including professional athletes, can suddenly, for no apparent reason, become extreme hypochondriacs, whose reports about their illness are either false or exaggerated.

You have to believe that for such people, the ‘secondary gains’ of assuming the role of invalid are somehow greater than loss of their profession, their income, their home, and often their families. 

You have to disbelieve what patients report about their experience, even though patient descriptions of this very complex disease are similar across historical periods and disparate geographical locations.  Patient experience, although varied in some ways, consistently reports that exertion brings on worsening symptoms, and that continued exertion brings on more permanent and serious relapse.

You have to believe that encouraging or coercing patients into doing something which is known to make them worse is a ‘safe and effective’ way to cure their illness. 

You have to believe that as many as a fifth to a third of patients are cured in this way, yet you cannot find this cohort of cured patients anywhere.  Unlike most patients cured of a disabling disease, they seem ungratefully silent about their good fortune.[9, 10]

If you have difficulty with all this belief and disbelief, maybe, as the Queen said to Alice, it’s just that you are out of practice!

References

1. Crawley EM, Gaunt DM, Garfield K. et al. Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Archives of Disease in Childhood Published Online First: 20 September 2017. doi: 10.1136/archdischild-2017-313375.
    http://adc.bmj.com/content/early/2017/09/21/archdischild-2017-313375
2. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, Washington, D.C.; The National Academies Press, 2015.  ISBN-13:978-0-309-31689-7. https://www.ncbi.nlm.nih.gov/books/NBK274235/
3. Nijs, J. et al, Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clinical Rheumatology 3 May 2013. https://www.ncbi.nlm.nih.gov/pubmed/23639990
4. Charlotte Blease & Keith Geraghty. Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome. Blog. Journal of Medical Ethics December 6, 2016.
   Charlotte Blease1, Havi Carel, Keith Geraghty. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome
5. Showalter E. Hystories - Hysterical Epidemics and Modern Culture: New York, Columbia University Press, 1997.
6. Ramsay, A.M. Myalgic Encephalomyelitis and Post Viral Fatigue States, second edition, 1988, published by the ME Association.
7. McEvedy CP, Beard AW. Royal Free epidemic of 1955: a reconsideration. Br. Med J: 1: 7-11. 1970.
8. Byron Hyde, The Little Red Book, A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome. As presented by Byron Hyde MD at the Invest in ME London Conference of May 12, 2006.
9. Tom Chivers. Inside The Controversial Therapy For Chronic Fatigue Syndrome That Some Patients Call A “Cult”. Buzzfeed 30 Dec 2017. https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.rlX64026v#.voENxJGNm
10. David Tuller DrPH. Trial By Error: The School Absence Study, Revisited. Virology Blog 2 Jan 2018. http://www.virology.ws/2018/01/02/trial-by-error-the-school-absence-study-revisited/