Positive Health Online

This article will not be welcomed by those who practice and believe in the use of NLP as an effective treatment for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - ME/CFS. ME/CFS is a complex, autoimmune disorder in which a range of physiological abnormalities have been reported,[1] including autopsies showing spinal cord lesions consistent with the symptoms.[2] Causes of death in people who have ME/CFS include heart failure, cancer and suicide - deaths from heart failure occur thirty years earlier than would be expected in the general population.[3]

The most reliable diagnostic criteria, originally set out by Malcolm Ramsay[4] those set out in the Canadian Consensus document[5] and the subsequent International Consensus Criteria for Myalgic Encephalomyelitis[1] give, as a defining feature of this illness the fact that exertion, physical or cognitive, causes exacerbation of all of the symptoms. This exacerbation, after slight exertion, may be delayed and protracted, for hours, or days. More protracted exertion can mean worsening of the illness for weeks, months, or years.

ME begins with a level of disability indicated, for example, by the fact that loss of 50% of normal function is categorized as ‘moderate’; while ‘severe’ means being bedridden, completely helpless, and reliant on assistance with every physical function. One researcher has compared the level of disability experienced by ME sufferers, from the inception of the illness, with the condition of an AIDS patient three weeks before death. (‘Joke’, from a website: Doctor to patient with ME: ‘The good news is that you aren’t going to die. The bad news is that you aren’t going to die.’)

NLP, used by an effective practitioner, can be very powerful in encouraging a patient to change beliefs, become highly motivated, full of enthusiasm and conviction. If this power is engaged in persuading a person with ME that all will be well if they just deny their illness, give up the habits of rest and energy conservation they have learned to use, and any aids they may also rely on, the patient may be carried along and attempt to overcome their illness in this way. The long term consequences can be disastrous. All too often, moderately severe ME/CFS, after a programme of exercise, becomes severe and apparently irreversible.[6] ME/CFS involves dysfunction in muscular metabolism; the aerobic metabolism is so dysfunctional that the anaerobic threshold is very low (the more severely ill patients may even exceed the anaerobic threshold when completely at rest). One would not expect a weight-lifter who had just performed at the very limit of their strength to benefit from further exertion; the nature of ME/CFS is for people to be at that limit on an ongoing basis.  As a consequence of this reality, most patients do all they can to conserve exertion, and conserving exertion within perceived energy levels, as a daily management strategy has been shown to increase the patient’s ability to function over the long term.[7]

Having pointed out that any form of therapy which involves denial of the biomedical realities of ME/CFS can be extremely harmful, therefore unethical, let us look at how NLP could be used ethically to offer genuine help to patients who have ME/CFS.

Reframing Exercise: It’s Really Bad for Us

Typically, the person who gets ME/CFS will previously have been highly motivated and active, a believer in exercise, in ignoring illness and injury. I should point out that this can be the case in a person who also has had difficult life experiences, and has suffered psychiatric problems. We acknowledge stress as creating vulnerability to illnesses and accidents; it does not follow that we treat such illnesses and accidents with psychotherapy and exercise.  When a celebrity dies from a drug or alcohol-related problem, the message about the dangers of drugs and alcohol is reinforced. When a celebrity dies from a heart attack following exercise - it has just been announced that Rik Mayall, aged 56, died from cardiac failure following a run - no one suggests that we should regard exercise as dangerous. Our culture is firmly wedded to the dogma that exercise is good for our health, and that the ability and determination to exercise are a measure of our commitment to taking care of our health. People who get ME/CFS often hold these beliefs particularly strongly.

The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS;  if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.

Time to Lie Down and Fight

Our metaphors about illness don’t help. When people die from cancer, it is inevitably described as ‘losing their fight’ against the illness. We can admire people who have a disability when we see them doing Olympic sports. If you are ill, or have a disability, you can only be respected if you are seen to be ‘fighting’ it. Most people who get ME/CFS will talk about struggling to keep up their job, or their education, while getting sicker and sicker, and eventually having to give it up. We are people who don’t believe in giving up or giving in - our self-respect, even our beliefs about ‘who we are’ depend on knowing that we do fight, we don’t give up.

Let’s use the way cats fight as our metaphor: when two cats fight, each one is fighting to get underneath - being on their back gives good purchase for using the hind legs to disembowel the opponent. So let’s fight the enemy by getting underneath, lying down. ME/CFS is an enemy that takes a long time to disembowel - we need to do it slowly, lying down a lot.

Our Best Weapon? Aggressive Resting

We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests - we need to fight against our natural impulse to pretend we are just fine when we aren’t - in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person.  And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability. No one wants that, and no one wants that for you.

Think about it. Before antibiotics, and all the rest of the panoply of modern medicine, what we had was the ability of our own body to fight against illness. Going to bed when you were sick was the obvious thing to do, and feeling sick is our body’s way of telling us to conserve exertion so that our immune system can get on with its job. The reason people died from HIV was because without proper immune system function, there was no way their body could fight against bacterial, viral or fungal agents that normally weren’t a problem. When you break a limb - the doctors can set it and put it in a cast - but it is bodily processes which carry out the repair. Now that we have antibiotic-resistant bacteria, we are back to where we were - with only our body’s resources to overcome these illnesses. Without a complete understanding of the causes of ME/CFS, and therefore without a treatment that can overcome it, all that we have is our body’s resources, and the evidence is that if we can conserve enough energy, our body can gradually overcome ME/CFS.

You are a strong, determined, highly motivated person. You need to use all of that to fight for your right to lie down - for a few months, or a few years - but the more you do, the better chance you have of gradual improvement. My wheelchair, adopted in the teeth of being told it was ‘career suicide’ has, twenty years later, been gathering dust for a long time…..but I still don’t do airports, or B&Q, without one!!

References

1.         Carruthers BM. International Consensus Criteria for ME (Myalgic Encephalomyelitis). Journal of Internal Medicine. July 20 2011.

2.         Wilson C. The Sophia Mirza Archive. [Internet]. [cited October 28 2012].

3.         Jason LA CKGSWSTHS. Causes of Death Among Patients With Chronic Fatigue Syndrome. Health Care for Women International. 27(7): 615-626. 2006.

4.         Ramsay M. Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath. [Internet]. Available from: www.name-us.org/Definitions Pages/DefRamsay.htm 1986, [cited September 6 2012.]

5.         Canadian Expert Consensus Panel. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome. 11(1):7-116. 2003.

6.         Invest in ME. Lost Voices from a hidden illness. 2nd ed. Wild Conversations Press ; 2010.

7.         Jason L, K-H C. Energy Conservation/envelope theory interventions. Fatigue: Biomedicine, Health & Behavior. 1(1-2):27-42. January 14 2013.