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“PVFS (post-viral fatigue syndrome) This term was introduced during the eariy 1980s in Britain as an alternative to ME. It remains a useful description for anyone whose illness can clearly be traced back to an acute viral infection. The drawback to PVFS is that it cannot be used to describe cases where some other factor (e.g. vaccination or pesticide) acted as the principal trigger.”

Quote by Charles Shepherd

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Living with M.E.: The Chronic/Post-Viral Fatigue Syndrome

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Charles Shepherd

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“It was some months before I acknowledged to myself that I had not improved, that I wasn't simply tired because I'd gone back to work, that my muscles ached regardless of whether I rested, and that the symptoms had remained a constant presence since their initial onset. Some symptoms such as the muscle pain were becoming worse. I went back to the medical practitioner. I was now diagnosed with post-viral syndrome... After 11 months from the initial onset, the medical practitioner told me that she thought I might have CFS.”

“The tiredness of M.E. or Chronic Fatigue Syndrome is so different to normal tiredness. We all say "I'm so tired". No you're not because you are still standing. The tiredness of M.E. is so different because it doesn't get better when you rest. It is tiredness through your bones. It is such a profound weariness. It's not due to muscle weakness. It is not loss of motivation or pleasure such as you get in people who are depressed. It is just exhaustion to your bones.”

“ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases[8], and is associated with a drastic decrement in physical functioning[9]. In a comparison study[10] ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36)[11] subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.”

“The people in whom CFS often takes a hold are those driven, workaholic, goal driven, perfectionist, 'never say die' characters. This is because these people ignore the normal cues that make us stop striving - they continue despite symptoms of fatigue and pain in order to achieve. The achievement is at the expense of their health. Furthermore, these personalities are more likely to turn to addictions to mask symptoms in order that they can keep going.”

“Everything I thought I understood about disease research, drug development, and the delivery of clinical care has been turned on its head. This isn’t science or medicine as I had come to know them but rather a parade of psychogenic bias, neglect, bad science, flawed public policy, and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth. The political decisions taken over the last thirty years have polluted research, perverted clinical care, and shipwrecked ME patients with a life-threatening dose of stigma, disbelief and medically induced harm.”