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Chronic Fatigue Syndrome, Post-Viral Fatigue Sydrome or ME?
By Phillip Johnstone

Chronic fatigue is not just a case of feeling tired or worn out is is an extreme form of exhaustion that is difficult to describe. Initially it may be compared to the post-viral fatigue suffered following a bout of the flu but far worse, rather like continual and never-ending flu.

It was in 1983 that I first fell ill, back then it was a real enigma. I had been a normal healthy teenager who was obsessed with fitness and I ran several miles a day, minimum! However, after suffering a form of flu or maybe glandular fever I did not seem to be returning to my previous state of health.

As the weeks progressed it appeared to me that I was, in fact, feeling more unwell rather than improving. Within only a couple of months my weight had fallen from a muscular 161 pounds (11 ½ stone) down to a weedy 100 lbs. I could hardly walk and was confined to bed in almost constant and severe pain. I was sent for tests at the local hospital but nothing obvious showed up. I was placed on antibiotics.

After several years of suffering from chronic fatigue (and other symptoms) I changed my doctor and sought advice as I had had to leave college and find work and was now finding that difficult. My new GP explained that I was suffering from Chronic Fatigue Syndrome (CFS) and that I was unlikely to ever recover due to the time I had already been ill, antibiotics would not help so they were stopped.

I started to investigate the disease and discovered that CFS was also known as post-viral fatigue syndrome. There seemed to be a group of people who were pushing for the acceptance of the term Myalgic Encephalomyelitis (ME) to be the accepted name for the illness but all I knew was that I was still very unwell and in a mess.

Further studies revealed that there were similarities with an illness referred to as Royal Free Flu Disease but, to me, this appeared more psychological than physical. It then started to appear than many consultants made the comparison between the symptoms of chronic fatigue syndrome and those of depression. This was interesting but, as I was not depressed, I did not consider this important. I decided to join a chronic fatigue syndrome support group.

My first visit to the CFS support group did not go well. It was clear to me that most of the people there were rather content in their illness and were actually suffering from depression. I went to the meetings a couple of times more then stopped as it was not very pro-active and most people just wanted to complain about how badly they suffered.

My next step was to look for support and information online. I managed to find a couple of groups for people suffering from myalgic encephalomyelitis (ME) or post-viral fatigue syndrome, there appeared to be little mention of Chronic fatigue syndrome (CFS). Initially I was very pleased, members seemed to be very pro-active and shared positive experiences and news of treatments. However it was not long before the newer members took control of the conversations and this too developed into a world of self pity. I stuck with the group for a while but it did not improve so I had to leave - I wanted to get better!

So it was back to the doctors for advice. By now there was more known about the problem. It seemed that it was still shackled to depression which was due to one or two well known doctors studies. There was news that SRI antidepressants could help so I tried them for a while - useless, they just wrecked my head. It was clear that it was NOT depression. I was sent to a famous consultant in the UK who explained to me that I had been very foolish in forcing myself back to college and then to try to continue working as I now had the problem for life (due to my actions). Damn I was furious, I lived alone so what else could I do? I gave up and continued to try to hold down a job.

After 10 years of suffering chronic fatigue and appearing to be getting worse I could no longer work and was forced to retire due to illness. I then spent the next 10 years trying every weird and wonderful "cure" available without success. By the year 2000 the weakness in my legs had meant that I needed an operation to re-align them and I could hardly manage to walk. My immune system was destroyed and I picked up any bug that was going around. I was continually exhausted and needed plenty of sleep. Sleep did not stop me feeling tired and I often awoke feeling more tired than before. I had developed many allergies, arthritis in many of my joints, particularly my knees, and I was in agony.

Finally, after almost twenty years of suffering from chronic fatigue, I managed to get an appointment at a pain clinic. I saw several consultants and they decided that I was not suffering from depression and was actually a classic example of somebody who was suffering from myalgic encephalomyelitis (ME). All the drugs I had been using were taken from me and replaced with newer drugs and I was told how to use them correctly. For the first time since 1983 I saw some progress and. although the prognosis was I would never be cured, there was further room for improvement.

Sadly I am still very unwell but I manage to cope. I do get annoyed with the strange hypersensitivity to certain things and the weird intolerance's that I develop from time to time and I am still getting more unwell - although much more slowly than before.

HOWEVER: One thing still really annoys me! What is actually wrong with me? Do I suffer from Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-Viral Fatigue Syndrome (PVFS) or one of the other many names this illness seems to have been given?

I wish somebody somewhere would sort this mess out.

If you suffer from chronic fatigue and/or any of the associated symptoms I hope that you find the articles below useful. I also hope that, by an early understanding of the condition, you will be able to get better rather than follow the path that I did.

Best of luck.

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