Mind or Body? Therapy for Chronic Fatigue Syndrome

Myalgic Encephalomyelitis or ME has earned itself over recent medical history the unenviable status in the popular imagination as a condition that is ‘all in the mind’.   Symptoms vary anything from mild fatigue to, fuzzy thinking, aching limbs, dizziness among others, and, in some cases, an inability to carry one’s own weight.  Sufferers are often sent on a long journey from the GP to haematology for blood tests to psychiatry, Cognitive Behavioural Therapists, NHS nutritionists, and when all that fails, to alternatives such as reflexology, alternative nutritional specialists, kinesiologists and so on.  And still there are no guarantees of successful treatment. 

General lack of knowledge about the nature of ME and why certain people are affected with it means that most GPs have to exclude all other possibilities before they can accurately diagnose ME.  And in many cases, where GPs themselves do not believe in the condition, it can be left undiagnosed for many years.  Sufferers will turn up to the surgery when symptoms get bad and often be prescribed anti depressants, though they are not suffering from primary depression.  Or perhaps they are prescribed some other psychiatric drug that might stabilise moods, though mood swings and depression tend to result precisely because of the undiagnosed ME.

The longer the condition remains undiagnosed and untreated, the more the personality learns to identify with the disease, and accepts the condition on a subconscious level as just “how things are” in the life of the sufferer.  The condition can breed a lack of hope, a deep sadness because of the loss of a lifestyle they formerly enjoyed and a general belief that they will never recover.  And modern medical intervention tends to confirm that belief as most attempts conventionally to treat this condition fail.

So what is ME?  How can it be more easily and readily diagnosed?  And how do we successfully treat it even when we have diagnosed it accurately?  These were questions I didn’t even ask when I met my first sufferers of the condition.  I had no idea whether I could treat them successfully or not nor much understanding of the condition.  So I listened to their stories, one after another with the great good fortune for our local GP’s to be referring their sufferers to me because they had no idea how to treat them.  And as I listened I heard a set of beliefs that were stunningly similar in all cases, without exception, of sufferers with ME.

Sufferers have lived since childhood in an environment where they measure their worth by how well they achieve or by what they do, usually for their primary carers.  Sometimes there is an abuse history, but often there is not.  What typifies sufferers is the belief that “I am not worth anything unless I can do things to show others that I am worthy.”  The converse of that of course is that “when I am ill therefore, and can do nothing, I’m not worth anything”.  This feeling of worthlessness puts added anxiety and pressure on the sufferer as they strive to prove they are indeed worth something by doing.  Then, what I call, the ME boom bust loop kicks in and sufferers get caught in a psychological trap of using all their energy to prove they are still effective, and then becoming exhausted for days or weeks after until the body starts to recover. 

CBT has observed this psychological trap and works to enable sufferers to retrain their automatic thoughts into something more constructive, taking the pressure off the body and enabling the sufferer to think more positive and supportive thoughts.  However, CBT has been shockingly unsuccessful with ME/CFS sufferers.  The exercises they are given they report, only work for the duration that they are done.  And a bit like antidepressants, wear off once you stop doing them so the underlying problem returns. Sufferers report feeling patronised and unheard by their therapists. 

And therein lies another belief that the sufferer holds.  “Whatever I say is not worth hearing.”  “When I go to the doctor’s with these symptoms, I am made to feel they are all in the mind.” “When I was young, I couldn’t be who I needed to be.”  “It was safer for me to hide my distress when I was young than to tell my mother about it” “My mother’s reaction to my upset made me feel anxious, so I didn’t show my upset”.  Sufferers have learned since earliest childhood that they have no voice.  Paradoxically, CBT while trying to enable clients to develop a voice, may use techniques that are generally too impersonal and therapists often do not recognise the fragility of the self in sufferers of ME.  Transference issues often conjure up feelings of the same relationship the sufferer had with their main carer when they were children.

I have learned about this simply by listening.  I have treated adults, and children and whole families that have ME.  How do I treat them?

Firstly as an integrative therapist, I listen very carefully to what sufferers are telling me.  I also listen very carefully to what they are not telling me.  What they don’t say often reveals more than what is said.  For example, a woman who, every time I ask about her relationship with her mother, says simply “it’s fine”.  Or the person who describes her mother in loving terms but who never mentions her father.  I will gently bring their omissions into their conscious mind and ask them to tell me a bit more.  Sometimes, this is impossible without hypnosis as the door to the subconscious mind remains firmly locked, and often for good reason, until the client is given permission to explore it subconsciously.

But I believe in all this the greatest healing takes place when you make a heart to heart connection with your client.  Listening to them with judgement, or with any kind of preconceived idea about how you will treat them or what YOU think the problem is, will diminish your chances of making that contact.  Your client, after all, has spent years and years observing how she might fit in with people around her to earn her worth, and will detect your position.  If you don’t make that connection, she will not feel heard.  Sufferers have had all sorts of techniques ‘done‘ to them.  What they need is to be the architect of their own recovery.  It is your job as a therapist to enable the sufferer to take the control back over their lives, not just to remove the symptoms.  Taking control back means they have to change some of their very deeply held beliefs which we can access far more effectively with analytical hypnotherapy. They have to give up the guilt and worthlessness for feeling ill and being incapacitated, and they need to relieve the immune system from the onslaught of adrenalin that it has to continually mop up due to the stress caused by their world view.  Excessive production of Adrenalin (a fight/flight hormone) can lead to adrenal exhaustion which produces all the symptoms of ME/CFS  (described by Hans Selye as far back as 1920’s).

So is ME really all in the mind? Or is it really in the body?  Perhaps the Grand Unification Theory of the 21^st Century should be the theory of mind and body being one and not only being related, but inherently one and the same. I have called ME a spiritual disease.  The word spiritual I relate not in the least to a religious doctrine, but to that broad understanding of who we are and where we belong in the world.  With relation to sufferers of ME, who they are is in relation to what they can do, and if they can’t do, where do they belong?

When the mind is ill, so is the body. And when the body is ill, so is the mind.  This creates a much more gentle and compassionate approach to disease.  The closest modern medical science comes to this viewpoint is with the relatively recent ‘discipline’ of PNI – psycho neuro immunology : the study of our thoughts and feelings on our neural and immune system.  Still hugely fragmented because it attempts to bring 3 disciplines together, it is slowly gaining cudos within the medical world.

In order to treat ME sufferers successfully, we also have to go on our own journey of self awareness, tuning into our clients with a far more intuitive awareness of their starting position and pacing, pacing and leading sometimes very slowly, and sometimes quickly to a place where they can feel better about themselves, relieving the stress on the immunity, supporting the IS with super nutrition, and providing your clients with weekly guidance on their journey.

The training I offer will provide you with an opportunity to become better acquainted with this condition and more successful in your treatment options.  It is a time for us all to earn ourselves a first rate reputation for treating a condition where conventional medical approaches fail.  The sooner you train, the sooner we can join together on Open  Mind’s register where we will become the centre for excellence in the treatment of this condition and perhaps, in a few short years, the first line of enquiry and not the last resort.

If you would like to train with me to experience how to develop this approach I am running courses in February 07 in Manchester, May in Essex Institute and in October in Bishops Stortford, Hertfordshire.  For further information please look on www.openmindtherapy.co.uk or the essex institute website (can you fill in?).