PVFS

An abbreviation for Post-Viral Fatigue Syndrome, officially designated Chronic Fatigue Syndrome . Hmm, but everybody's tired, no? What's so special about a case like mine? Read on a little if you want to know.

Two wider points:

  • I had this badly for 12 years, and now less so. It derailed my life, and still presents huge ongoing difficulties for me.
  • The difficulty with a barely-understood illness like this that leaves no obvious biological markers is that we feel that we're saying to people, "I have I'm feeling very unwell syndrome". There's no particularly credible frame of reference for people to use. So, inspite of the awful symptoms that we feel, we can be silently discarded as malingerers.

Unfortunately it's essentially been handed over to psychiatrists, against better advice, but with lots of lobbying from US insurance companies, who have thus avoided big payouts to better insured people than me who just suddenly got inexplicably very ill, like I did. None of the scores of tests that I had in the UK could identify what was wrong, why I was feeling like this:

  • constant sore throat
  • my whole body buzzing, as if I was being electrocuted
  • frequently feeling icy cold inside
  • permanently hungover, with almost constant headaches
  • burning muscle pain for days after light exertion or exposure to cold
  • hypersensitivity to cold, and sometimes noise and light
  • continuous exhaustion with a need to sleep deeply at inappropriate times
  • almost constant nausea
  • dull continuous pains in all of my muscles
  • weird sudden lancing pains through my thorax
  • sexual pleasure gone, and replaced, on the occasions I tried, with pain
  • bowel pains (and all other symptoms worsened) after eating
  • seriously debilitating brain fog
  • a wave of pain on perfectly normal adrenalin alerts
  • a feeling that I had shackles around my ankles

Before this happened to me, I too was somewhat cynical about inexplicable illnesses. Then I lived through 12 years of waking up every morning to the continuing nightmare of my ill body. I tried so many things to get better, and nothing really worked, so I kept returning to working at acceptance, and getting on with life as I could anyway. The remedy that finally seems to've partially worked for me was also completely surprising to me: eating as high a proportion of raw food as possible.

the search for causes

- is inevitably haphazard, and full of dead ends. I gave up reading " Osler's Web ", it was too depressing for me. I decided that if a cure arrived for me, it would probably be unexpected, and that seems to've been the case. Still, I'm a scientist, and I understand the value of systematic research efforts.

universality of illness

I personally found buddhist teachings superbly apt, and, in my long and necessary periods of rest I reflected a lot on the feeling of loss that all illness can bring. I reminded myself constantly that this is the order of things, we flourish and decline, like everything else. This kind of thinking helped me to reduce my psychological suffering, and continues to be useful in new predicaments that I face now that my health is more normal again.