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October 27, 2011 / zzirf

My medical input for today – proposing new jargon – PFCS

P.F.C.S

Today I have decided that that I don’t have P.E.M .or P.E.N.E. I have a post-fun cytokine storm. Surely that is a better way to describe my crash after celebrating Karla’s birthday last week (or was it the week before?). Post fun cytokine storm has an acronym too. P.F.C.S. I like my term and since their terms haven’t sparked enough interest in Government funding of Myalgic Encephalomyelitis then perhaps emphasising the post fun or post “good times” aspect will let people know that most exertion is actually fun.  If it is easy to move, no doubt you will be a mover.  I liked going out for a dance with the girls. But I couldn’t get away with it. There was a price in down time. Now I pay the same price for simply going to the shops. This means that I do not go dancing any more. Some have suggested graded dance therapy but I have decided that would be foolish if leaning on a shopping trolley for too long causes a cytokine storm within 72 hours.

The cycle of inflammation. B cells communicate via cytokines with other inflammatory cells, such as T cells and macrophages, to maintain and amplify the cycle of inflammation - Click Photo for its source

The cycle of inflammation. B cells communicate via cytokines with other inflammatory cells, such as T cells and macrophages, to maintain and amplify the cycle of inflammation

Let me explain the cytokine storm (CS) part of the term PFCS. It’s a brain signaling thing. And you have experienced a cytokine storm if you have had such a bad case of the flu that you had to be confined to bed for a couple of weeks because you had no choice. Your body wasn’t working. The weakness, aches and dizziness are part of it. It is a normal immune response but it can be fatal if too many immune cells are activated. This is the reason for the deaths associated with the Avian Flu, the Swine Flu and the SARS epidemic. (reference Wikipedia)

Luckily the rest of us survive and we quickly forget the pain.

Unfortunately for M.E sufferers, these cytokine storms seem to be happening for no good reason other than to indicate that “you had better stop doing that” so gradually M.E. sufferers have to let go of those activities or pay the price of the Avian Flu in disguise – not just once in a lifetime but every single month or more for some.

Read More About Cytokine Storms

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3 Comments

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  1. zzirf / Oct 27 2011 4:07 PM

    I stopped writing this blog because of now have too much PDP (post doctor pain) and I don’t think I can hold myself up any more.

  2. Lilith Rill / Dec 6 2011 10:53 AM

    I was happy to finally come across a very readable explanation of what cytokines are. I’ve often heard them mentioned in relation to ME but had no understanding of them. Our immune systems behave very strangely then, partly overactive and partly underactive? I also loved your sense of humour, Judy. A very engaging post.
    Lilith.

    • zzirf / Feb 6 2012 3:04 PM

      Thanks Lilith – I finally got around to putting in a link that explains cytokine storms more professionally 🙂

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