The Website for Sufferers of
Chronic Fatigue Syndrome and ME

David & Jennifer's story

David's story

David: When I actually began to look back over my life, I realised that the symptoms have occurred on and off since I had the measles at 12 years old.  I unknowingly exercised vigorously when incubating it and as a result was off school for a whole term.

David: No, it is a condition where relapses are common, and there have been periods in my life when I have felt absolutely fine and periods where I have been seriously ill as a result of the condition. The next illness lasted throughout a term at school when I was 14.  I had recurrent bronchitis, the only attacks of asthma in my life, and pneumonia.

When I was working for, and during my 'O' Levels, I had what I would now call 'Brain Fog,' where my performance dropped dramatically.  The school doctor discovered my recurrent low blood sugar.  I carried around a jar of sugar and could get tea in the kitchen.  Six spoonfuls temporarily restored me! 

I became more and more tired physically and mentally.  I would rest and pace myself during the holidays, be fine for the first few weeks of the term, and then suddenly go down hill.  The final insult was the school doctor, with great insight for the 1950's, forbidding me from playing games or running.  I had to take a gentle walk!  You can imagine what the other boys thought as I did not have any obvious physical injury, like a leg in plaster!  I have realised since that this is often a problem for people with ME., except for episodic facial pallor, they do not look ill.

Pacing myself did help me and I will always remember Dr Clelland's support and kindness.   He did a very important thing, he used to sit me down and get me to explain exactly what I felt was happening, how my stamina was etc.  Later, he told me that when I felt faint I should see the matron and go to bed early.  In retrospect this may have been the beginning of the neurally mediated hypotension. 

[In neurally mediated hypotension the blood drains from the head so that areas of the brain have inadequate circulation, the symptoms vary depending on the parts of the brain with the poor circulation.  This is why 'brain fog' occurs]

The next stage was my first year at medical school. I developed what was labelled 'Atypical Glandular Fever,' but as the tests were negative my father wrote to the Haematologist saying that whatever it was it could not be glandular fever as the tests were negative.  On the other hand my spleen was very enlarged so what was it?   Later I even had angina when running.

My father died in 1964.  This was obviously a difficult time and my illness started to re-occur.  I fainted on a ward round.  Later as a resident I collapsed at 2am on a ward at Corstorphine hospital.  The nurse came to see why I had not returned to the nursing station and found me unconscious.   I was put to bed in my room and observed by the night superintendent.  I only responded to painful stimuli and was apparently unconscious for 5 hours, being transferred to a ward in the Royal infirmary the following day.  The episode was later labelled as 'having had a severe faint'.  However, the nurse told me, she had never seen a five hour faint before!

[Often with CFS-ME, the symptoms are there, but the doctor plays them down or cannot relate them to any condition he knows.]

David: Yes, in retrospect, this was the first really bad attack of my neurally mediated hypotension, which is why CFS-ME patients have decreased brain circulation.  This is why the patient, the family, and above all, the physician must look out for and enquire about recurrent facial pallor, what I call 'The Mason Brown's Facial Pallor Sign.' When it is present the underlying brain circulation is decreased, often including decreased circulation to the hypothalamus and the pituitary.

David: No.  This was still the 1960's.  After I had finished my residency I was off ill and then worked part time for 3 months, and during this time I wondered what was wrong with me, especially as for a time I found I could not remember things I had read.  In fact from that date I was never able to take another examination, and, in particular, things like a multiple choice were very confusing to me.

Jan: What about the 70's and 80's, was your health better during this period?

David: Over the 70's and 80's I had periods of what seemed like depression, and I was increasingly resting at weekends.  From the mid 70's onwards I found that I was feeling increasingly tired and when we went on holiday in 1976 to Granton on Spey, I had to spend most of my time between meals resting in my bedroom.   Between 1970 and 1980 I was working full-time in North Berwick.  This meant working in a team and at first I was known for my ability to dictate a letter with no mistakes, and get through my administration quickly however, this gradually deteriorated.  Sequencing, that is, putting thoughts and tasks into an order, is a particular problem for many CFS-ME sufferers, and certainly something I have had difficulty with.  I also became much more tired.  I needed more and more rest at weekends and our social life went totally by the board except for my mother and sister and a very close family friend, who showed what real friendship and support really is.

David: Yes, I continued to deteriorate and my resistance to infections decreased.  A urologist diagnosed chronic prostatitis and had me on the antibiotic, Septrin, for six months.  In January 1980 I had to resign from the North Berwick Practice.  In those days the population of North Berwick doubled during the summer months.  During the Summer of 1979 for various reasons for two months there were only two GP's to cover the whole town as well as the holiday makers!  One of the two was me!  We were so short staffed that each of us was on call every second night and every second weekend.  A result of this was that one Friday, at the end of the summer of 1979 I went to bed and was literally unable to get up again. 

At first I thought there was a neurological problem,  in retrospect their really was, it was due to ME.  I use that name to differentiate if from what I see as a milder version or variant, namely Chronic Fatigue Syndrome.   I had various neurological symptoms, [right foot drop, where I was unable to hold my foot straight, fasciculations, clonus, these are also found in other conditions such as MS which is another reason why CFS-ME is often misdiagnosed] my balance had gone, and I had terrible headaches and muscle pain.

This resulted in 6 weeks in bed.  At times I thought perhaps it was depression.  Luckily for me I had the medical knowledge and training to be able to question this, certainly as the primary diagnosis, as the symptoms were not the same.   They just felt different.  I was helped greatly by the late Dr Richard Parry, the psychiatrist.  Together we diagnosed CFS-ME in 1981.

[ I can understand why medical colleagues, and especially psychiatrists, have mistaken CFS-ME for depression.  This is due to a lack of awareness that many symptoms of CFS-ME mimic psychiatric or psychosomatic illness.  Many people with a severe illness can develop a reactive or secondary depression, due to not being able to work, chronic pain, etc., but it is not the cause of the illness, just as someone can have a reactive depression to cancer.  In computer terms: Depression is as if the person is running a software programme that makes him or her think in negative ways.  CFS-ME is as if they have decreased power to the computer, so that the software will just not run properly.   This is what we call 'Brain Fog' today.   However, it is important to understand that ongoing negative life events, recurrent infections, chronic inflammation, etc. can depress the immune system.]

When I was back to a certain level I did locums, and worked part-time as a principal GP for 10 years until 1990.  With the medical ignorance at that time I tried to carry on working under cover of medication.  I was given twelve Amitriptyline 25mg tabs daily to suppress my headaches and eight Co-proxamol tabs daily to suppress the muscle pains.  In reality all this did was allow the CFS-ME to continue in a masked state and in 1990 I tried to increase my workload and became very ill.  After 6 months unable to work at all I was given early retirement on health grounds from 1/1/90. At that point I decided it was my responsibility to get myself better, this was the priority.  There would be time for work when I got myself better. 

David: Yes, it really destroyed 15 years of my life and my wife Jennifer's' life as well. It really decreased the quality of life of the whole family.  Throughout this period I was unable to look after myself, and was totally reliant on the support that Jennifer gave me.  It is essential to give enough support to families.  Many professionals do not realise the devastating effect CFS-ME has on the family unit and as a result inadequate support is often given by the GP. and the social services, including Disability Benefits.

David: I retired from the health service on health grounds, and made the decision that if I was going to get better I would have to find the answers.  Initially my focus was on finding a way to restore myself to health.  Later this was extended to helping and learning with people who had CFS-ME.  Today, this must also be on how we prevent people getting CFS-ME in the first place, and on early diagnosis and treatment.  Help must be especially given to the most ill, the 25% with ME. who can be ill for years, and also the children.

The suggestions on this site are the result of years of research and observation on myself, as well as help from patients and their families.   They are a result of working with colleagues in other medical and related disciplines, and reading international research by many specialists.

David: In 1990, taking the decision 'if it is to be it's up to me.' and that 'responsibility is the ability to respond.'  This depended on insights, knowledge, and developing the skills to apply them. That is what I did. As soon as I got myself up and about in January 1990 I went to see a psychiatrist in the Edinburgh Royal Infirmary.  He thought I seemed very positive about the illness, but it was because I knew I could work to get better.  He seemed impressed by my attitude towards recovery and I never needed to go back.  I had been using cognitive therapy techniques with my own patients since 1976 and so I had some of the knowledge as to how to keep positive to help myself.

The use of the alpha state helped enormously [This is a healing state which enables your body and mind to heal itself.   You can teach yourself the alpha state, or learn it with the help of a qualified practitioner.  Modifying the frequency of your brain waves and entering the alpha state places you in direct communication with your subconscious mind and the rest of your body.  It produces a healing state described by Dr. Benson, the cardiologist, who heads Harvard University's Mind-Body Institute, as the Relaxation Response.  This is the exact opposite of the Fight/Flight Response].  I joined the British Society of Medical and Dental Hypnosis, and learned self-hypnosis, deep meditation, and autogenic training, and I used those for mind-body healing.  But when I was assessed by a Reflexologist friend she said that I was healed in mind but not in body.

I had to learn to pace myself and realised that 'if you do not use it you lose it.'  Unfortunately, as with a sports injury, if you overuse it you can also lose it.  In 1990 it took 5 minutes at worst to go up a flight of stairs holding on with 2 hands, in April 1990 I made a decision that before the end of the summer I was going to get to the top of North Berwick Law (500ft).  At that time I could walk 300 yards on the level.  I paced myself, so if it was a good day, I would follow the same route, but extend it by 15/20 yards.  If it was a really bad day, and I was decompensated [when a person compensates they are able to keep going even when they are not feeling well, decompensating happens where a persons compensating abilities have become exhausted and they are suddenly no longer able to compensate] I didn't even try to go out.  I was like an athlete pacing myself, before the end of July 1990, my eldest daughter and I went with a camera, and she took a picture of me on the top of the North Berwick Law Hill.   

However, 'graded exercise' and cognitive therapy only got me back to 70% of my previous level, that is my previous physical and mental level.  There were still several things I had to do to get me up to the 95% I have now.

The next insights for improving mental and emotional function were:

1. How to diagnose when initially de-compensating and to take rest at the right point.

2. How to treat neurally mediated hypotension and brain circulation. 

3. How to treat brain function with nutrition.

4. How to detoxify the brain of neuro-toxins, and body fat and muscle of chemical toxicity.

5. How to treat mineral deficiency in CFS-ME.

6. How to boost the immune system in CFS-ME.

7. How to rid the gut of candida and parasites.

8. Long term dealing with herpes simplex viruses etc.

The toxicity in my case was caused by organo-phosphates.  I have a genetic susceptibility to them, although different people have different susceptibilities. That is, CFS-ME does not hit everyone in the same way.

David: The frustration was that no one else seemed to be able to help, and the knowledge that my own attitude and positive thinking were crucial to getting better.

David: I am the Medical Director of Equilibrium Associates Limited, which is a company working in the areas of stress management and corporate health and performance. I work full time, running workshops in stress and lifestyle management.

David: In the same sense that when someone has a virus the susceptibility is always there within his or her body. Because CFS-ME affects the immune system, you can develop other things very suddenly when you have it, so the patient and the GP have to be on top of any symptoms. I say that I am 95% better, just like anyone I have to be aware of what my weak spot is, and protect myself and take precautions.

David: If I have overdone it I may feel rather tired, but I am so aware of the warning signs that I am able to take action immediately.  I have made a lot of changes in my lifestyle too, so that overdoing it is no longer something that occurs on a daily basis!  In reality, I am now healthier with more stamina than I have had for thirty years.

In 1995 I was bitten in Jamaica while on holiday there, when I got back I had to be rushed to the Royal, to a unit I had previously worked on, because I had 5 abscesses in my liver, in fact my immune system at that time was virtually non-existent!  If it had not been for modern medicine and technology I would be dead.  However it is important to remember that although modern medicine is a wonderful fire brigade, it is far better not to start the fire in the first place!   During that period I was given 2 antibiotics by drip, and the abscesses were drained under a scanner.  I was unable to work for 6 months and then resume my own private practice and workshops.

David: Feeling tired and irritable, and, if I accidentally ingest organophosphates, indigestion!.

Jennifer's Story

Jennifer: In 1980 David had to stop work and Lucinda was born in 1977.  I had to cope with a sick husband, and a young toddler.  It was like a bombshell had landed as he didn't have any insurance for illness, so there was also a huge financial impact.  Working was just not an option for him, as he was so ill, and a few years later I had to cope with 2 young children.  It was really irritating not being able to do things and having to cope with the children on my own all the time.  He was so irritable, but at that time there was no explanation for it so it was very hard to deal with.  I felt like I was constantly 'pulling the cart by myself.' Fortunately I was able to go along to a friend's house with our 2 year old occasionally so that David could get a proper rest, without interruption.

Jennifer: He was so irritable, and tired all the time, it was a very difficult period, I can imagine it would be very difficult if you didn't feel that the relationship and the person were worth holding on for, but I felt that it was worth it.  When he was working, he didn't put a foot wrong, but he was so exhausted when he did come home that he wasn't able to do a thing.  He was a very angry person at that time.  Again this was something that didn't come across to his patients, but he took it out on his family. 

He also became very paranoid at this time, and seemed to think that everyone was against him.  In fact he now says he was convinced that we were going to try to certify him, and nothing could have been further from the truth. This came down to little things as well.  For example, if he couldn't find something, he would think that we had purposefully hidden it from him.

Jennifer: I don't spend a lot of time thinking about the future, I just get on with things, in the moment.  I am a very practical person and always try to find a solution to things, and this all helped me to cope, but I knew that he had a good brain, and that hopefully he would come through it all in the end.

Jennifer: I was determined to make things look like nothing had changed. I always had the attitude that I just had to get on with things, and not dwell on the problems.  I always just thought, right, what needs to be done, and got on with it.

Jennifer: I tried to make it look like nothing had changed, and in this regard I didn't really talk to David about it, he wasn't in a state to take on board my thoughts and feelings. His main answer, which always worked, was, "at least you don't have it!"

Jennifer: It just seemed that so little was known about CFS-ME at that time, and so it was very frustrating.  Obviously now other people can benefit from the things that David and other colleagues have discovered over the years.

Jennifer: He is back to normal now, and is just aware that if he does get tired he needs to take precautions, and listen to his body.

Jan: What impact do you think all of this has had on you, now that you look back?

Jennifer: It is irritating to think how time consuming it was, but you cant spend your life looking back.  I tend not to look back because he has recovered from the illness, and had such a good recovery.

Jan: Do you think the whole experience has had an effect on the family?

Jennifer: The girls knew about having a grumpy father, but luckily for them he was only grumpy, it could have been a lot worse, it did add tensions that had not been there before though.

Jan: How did you feel when you started to see him return to health?

Jennifer: There was a feeling of relief, the less he was troubled by it the more relieved we became.  Everyone could relax, he had more energy, and we could do family oriented things again.  There was a feeling of relief that we could do things again, walk, physical activity and be a real family.  The girls had their father back to his normal self.

Jan: What changes did you notice in him as he was getting better?

Jennifer: He had more energy, it was as if his true personality came back, the grumpiness had gone, he seemed to be thinking the way he used to think again, that is, not that everyone was against him, there was generally a great improvement and he could think clearly.

Jan:  Did anything positive come from these experiences?

Jennifer: I understand what people are going through when they are unwell, I know that CFS-ME is a real illness and I have more understanding about it.  Also David has learned to pace himself, which is a positive thing.  It made him much more aware of having overdone things, more aware of when it was coming on.  Here was a husband and father who had been very ill, but now we have all seen the illness and we have dealt with it, tackled it, and come through.  We all know the ways to stop it from coming back and David knows how to pace himself.

Jan: What do you mean when you say you are relieved?

Jennifer: I am glad he is over it, relieved that he is back to the way he was before the illness.  It is a relief that he is able to continue working again, that he has his health back to continue working.