Chronic Fatigue Syndrome:

From always tired to balanced in energy

By Joop de Vette, M.D.

Introduction

Chronic Fatigue Syndrome (CFS) is a clinically defined illness characterised by a principal complaint of severe fatigue of at least six months duration associated with considerable physical and mental disability. It is not yet explainable as a recognised organic disease. Usually a variety of non-specific symptoms, such as myalgia, impairment of memory, and difficulties in concentration, accompany the fatigue. Up to 80% of the patients report a sudden onset of symptoms after a “flu-like” illness.

A number of somatic and psychological hypotheses have been proposed to explain the cause of CFS. These include viral infection, dysfunction of the immune system, neuro-endocrine disturbance, and depression. All of these remain controversial.

CFS is not a new medical condition, but in the past fifteen years it has been the object of renewed interest. In 1869, neurologist George Beard used the term “Neurasthenia” to describe a condition of “nervous exhaustion, characterised by undue fatigue on the slightest physical and mental exertion with which are associate symptoms of abnormal functioning, mainly referable to disorders of the vegetative nervous system.”

In the middle of the twentieth century (1934 to 1958), several outbreaks of fatiguing illness were reported and called by various names: Icelandic disease, Akureyri disease, Royal Free disease, atypical poliomyelitis, epidemic neurasthenia, and so on. Two episodes have particularly attracted attention: the epidemic at the Los Angeles County Hospital in 1934, and the outbreak in the Royal Free Hospital in London in 1955. Bearing in mind the fear of a new polio virus epidemic and the predominance of neurological symptoms (although usually mild) in these case clusters, the syndrome has also been called benign myalgic encephalomyelitis (ME). This term emphasises its nonfatal character, muscular pain, presumed parenchymal damage to the nervous system, and presumed inflammatory disorder.

Renewed interest in patients with chronic persistent fatigue began in the 1980’s with the emergence of chronic Epstein-Barr virus infection. Symptoms included persistent fatigue, sleep disturbances, headache, myalgia, depression, impaired memory, confusion, inability to concentrate, lymphadenopathy, and a sore throat. Later studies did not find differences in antibody levels between fatigued patients and nonfatigued healthy controls.

While working as a General Medical Practitioner, I met five young women diagnosed with CFS. They were in bed for the largest part of the day. They were not able to do their normal daily tasks, and were thought to have no future, having a “chronic” disease. Interested in Neuro-Linguistic programming (NLP), I wanted to find out what NLP could do for these women. I held a workshop for doctors of the Department of General Internal Medicine and Medical Psychology in Nijmegen, and was unable to interest them in finding new ways to help people with CFS. So I designed my own project, with a summary based on Dr Richard Bolstad’s NLP RESOLVE model of therapy.

I started my project with two questions:

What can I do using NLP for clients with CFS?
How much time does it take to treat clients to help them only to be tired in a normal way?

And one hypothesis:

CFS is a temporary behaviour and can disappear.

Clients

This study was conducted at Het Doktershuis, a place where three family doctors work in Wijchen in Holland.

Five clients were recruited from this practice; and, in a short time, three others were referred by other doctors. Five of these clients (seven of them were women), were included in this project. The results from the other three clients were similar to the five described in this project. However, the other three consulted me before I started working on the CFS project, so their progress was not documented.

The women were from 16 to 22 years old. They were all diagnosed with CFS by a Doctor of Internal Medicine, and had had CFS for periods varying from one to five years.

Methods

When I started working with these clients, we first set a time frame. We contracted to meet each other five times in three months. The meetings would take place in weeks 1, 3, 5, 8 and 12. While doing this, I gave them a high expectation of healing. In setting my intent with them, I told them I would be their consultant rather than their doctor. The women committed to doing homework.

Rapport:

Many clients with CFS have long-lasting periods of disability of all kinds. Very often they have a long struggle for recognition of their complaints and their “disease.” In working with people with CFS, it is important to establish a relationship of total respect for the client, acknowledging their disabilities. Acknowledgement of their problems is crucial in working towards rapport and effective collaboration. At the same time, it is important to open up the client’s perspective towards a healthy future, letting them know that they have all the resources to reach the goals they have set. This requires effective language patterns and accurate reframing skills.

Goalsetting:

The clients were asked to set goals stated in the positive, and to look beyond that goal to what really was of value. It was a surprise to them that all of them had higher goals. These goals had to do with finding balance and self-respect, not only being full of energy. After setting their goals it was easy to get to the question: “What stops you from getting that.”

Family Constellations:

When the clients tell their stories, I am especially interested in the first appearance of CFS. I also want to know about their family of birth. All the young women had an extra burden, carrying others’ responsibility. One of them was born as one of triplets. Both other children, her brothers, died at birth; and she always had the feeling of having to be special. Two other women had mothers with fibromyalgia. They felt very sorry for their mothers, and were in second position (being the mother) while talking about the XXX. The fourth woman had one sibling, a boy with Down’s syndrome, and she always wanted to please her parents, saying: “It’s difficult enough for them.” Two of the women felt very sorry for their mothers, who had bad relationships with the partners. I found the same patterns in two of the other three people I saw before I started my project.

Somatic Attributions:

All eight people had a lot of somatic attribution – beliefs about somatic causes and attributions (what Robert Dilts would call “thought viruses”). Chronic Epstein-Barr infection, herpes infection, chronic candida albicans infection, as well as immunologic dysfunction, and abnormal erythrocytes were mentioned as causing their “disease.” Some of them had had years of treatment for these “causes.”

Reframing:

From the moment we began counselling, I started reframing negative beliefs and adding in counter-examples (examples that show that the belief they have is not always true). I used organ language to illustrate further what it was that they were doing, for example: “Whom are you carrying on your back?”

I told them that CFS is a process with a beginning and an end. During this process there would be days that the person could do almost anything without getting exhausted and days that even getting out of bed could be too much. I told stories of persons who had healed themselves of CFS, some in a short time. Others in a longer time. I asked them to stop talking about being a CFS patient and to start saying: “There are times I feel very tired” (from identity towards behaviour).

An important NLP presupposition is that every behaviour has a positive intention, at least for the person. We started talking about what the intention might be; in other words: “What would your body want by giving you this great fatigue?” We started looking at fatigue as a message that deserves great respect.

Then I told them my idea about CFS as an “allergy like” reaction of the body, where the immune system wants to protect the person. When it started, the fatigue was the intense call for rest and taking time for self, often precipitated by a viral infection in a body that was already out of balance. At that moment, this reaction was a very useful one. As human beings, in a lot of ways we keep reacting like we did as children; and our immune systems do the same.

Time for Self:

If we want to learn a new behaviour, we first have to have permission and find ways to rest and take time for self. Part of the clients’ homework was to take half an hour two times a day to find a place without distraction and, if possible, to write a life story.

Exercise:

To prevent the clients from getting tired again, they had to stop exhausting themselves and schedule exercise and rest. We chunked down their walking to manageable distances for each person. In most cases we decided to start with 200 meters twice a day and no more. Every three days they were allowed to expand their distance by 25 meters. I told them to do no more than we had contracted.

Sleep:

All of the clients I saw were sleeping 12 to 23 hours a day, and had found that all that sleep did not help in relieving the fatigue. We contracted to sleep ten hours a night, starting at ten o’clock. If they wanted, they could sleep one hour in the afternoon and no more.

Digestive System:

The digestive system of a person with CFS is often very sensitive. They agreed to eat healthy foods that would be accepted easily by the body.

Metaprograms

In working with the clients, I found people with a proactive lifestyle, away from orientation to problems, and with attention on the other. Their orientation was external. They were large chunk. First position in relating to others was a strange place for them.

Project Development:

One of the five women I saw only twice, and we had telephone contact the other weeks. The others I saw as scheduled. During the meetings we talked about the results and the feedback they were getting from their bodies. When the clients wanted, I read their life stories before we met. We set new goals for the weeks to come, gradually expanding earlier ones. Again I asked them not to go beyond what we had agreed upon. We dropped sleeping during the day, and cut back to nine hours of sleep at night.

Results

Success came fast, and they all were very happy with the results. In the 12 weeks of the project, they were all able to drop the diagnosis of CFS. They all had acceptable energy levels no different from a normal population, and they were able to eat almost normally again. All knew that progress had begun and looked with trust to the future.

During the following months, the results held and progress continued. We met every three months to evaluate, sooner if necessary. They all made big changes in their lives.

Facts:

It is difficult to scale fatigue. To find an instrument to measure and document the most frequent complaints of CFS, I used the Checklist of Individual Strength (CIS) (Vercoulen, Swanink, Fennis, Galama, Van der Meer and Bleyenberg, 1994) developed by the Department of Medical Psychology of the Academic Hospital in Nijmegen.

This CIS consists of 20 items scored on a 7-point Likertscale (from “Yes, that is right” on one end to “No, that is not right” on the other end). The CIS also contains four subclasses:

Subjective Fatigue : (8 items, for example: I feel so tired)
Concentration : (5 items, for example: It is difficult to keep my attention)
Motivation : (4 items, for example: I don’t feel like doing)
Physical Activity : (3 items, for example: I think I don’t do enough on a day)

	Initials	Year of birth	CIS20r before week 1	CIS20r after week 12
1.	E.B.	1979	89	37
2.	M.v.G.	1979	128	32
3.	C.N.	1977	115	67
4.	M.S.	1982	118	37
5.	R.J.	1981	115	33

	Subjective Fatigue Subclass 1	Concentration Subclass 2	Motivation Subclass 3	Physical Activity Subclass 4
	week 1	week 12	week 1	week 12	week 1	week 12	week 1	week 12
E.B.	46	16	21	9	6	4	16	8
M.v.G.	56	14	35	10	22	5	15	3
C.N.	51	37	28	17	20	7	16	9
M.S.	51	17	25	10	23	5	17	5
R.J.	63	16	24	6	19	5	9	6

Stories:

Person 1 was able to begin her studies again, and work as a full time assistant in a dental practice.

Person 2 is a law student. She is active in the students’ union and plays volleyball at a high level. Sometimes she goes beyond her limits and forgets about herself. She recognises it, and takes a couple of days for herself and recovers very quickly. She refers a lot of new clients.

Person 3 did a lot of symbolic work regarding the brothers she lost, and for the first time in her life was able to talk about them with her parents. The boys have their place now on a mantelpiece in their home. She is capable of loving herself and her life again.

Person 4 had asked for a computer to be covered by her health insurance, because writing made her too tired. She cancelled the request, and is now going to the university. Still living with her mother, who is suffering from fibromyalgia, she needs to take good care of herself and exercise.

Person 5 had been declared unable to work. She wrote a letter to have this changed. It took her a lot of time, but she succeeded. She now works full time in a job she really wants. She is no longer carrying the responsibility for her parents’ relationship.

Summary

Using the RESOLVE model of therapy (Bolstad, 2002) helps me summarise the project:

Resourceful state

Establish a relationship of working together, accepting the other, and having faith in the outcome rather than a magical or dependent one.

Establish rapport

Acknowledge the person’s difficulty.
Truly respect the person and recognise that their behaviour is still the best option.

Specify outcomes

Set a time framed consulting contract with outcomes.
Build expectancy of change and explain the need for completing the tasks at home.

Open the client’s model of the world

Give a model for fatigue that the client can accept, and explain how it can change.
Elicit “logical levels,” and elicit the difference between being (identity) and doing (behaviour).
Find the limiting beliefs and reframe them.
Give lots of counter-examples.
Reframe fatigue and the symptoms as manageable feedback.
Use solution-focused questions to build resources.
Use organ language to clarify the behaviour.

Leading to desired state

Teach the person manageable changes in exercise.
Help them to remember all the positive changes they have had.
Teach the person to alter their perspective.
Give first position exercises.
Admire them for not going beyond their limits.
Show the difference between being in “self” and in “other.”

Verify Change

Use the CIS to show the clients their improvement.
Acknowledge the (big) changes in working, learning, and living.
Show them how they are more in “self” in our meetings.

Exit: future pace

Follow up.
Teach them what to do in the future when they feel tired.

Reference

Bolstad, R. 2002, RESOLVE: A New Model Of Therapy, Crown Publishing, Bancyfelin

Joop de Vette is a NLP trainer, a shamanic healer in the Inca tradition, and has been influenced by Andrew Cohen’s evolutionary enlightenment. He has been a Medical General Practitioner since 1987 and a student of Integral Medicine since 1990.