The B1 bomb: an exercise in hope for a writer with CFS

***PLEASE DON’T TRY THIS EXPERIMENT AT HOME – unless you’re me, of course.***
***DISCLAIMER: I am not a medical doctor, nor do I play one on TV.***

I am, however, a PWC (person with CFS) of long standing (24+ years), and can tell you that hope is a problem when you have a permanent disability or a chronic illness.

From Wikipedia comes a good definition of hope: “Hope is the state which promotes the belief in good outcomes related to events and circumstances in one’s life.”

I have always been fascinated by the concept of what happens to a person when a long period of focusing on illness is suddenly changed because the illness is cured, or improved. With my mother and grandmother, as I watched years of their lives being lost to dementia, I have always hoped that someone would figure it out, and give them a medicine or treatment that would cure the physical problem. It is too late for my grandmother, Mamina, but I still hope and pray for my mother because I miss her very much and she is still with us.

There is a Dorothy L. Sayers short story, The Incredible Elopement of Lord Peter Wimsey, with that theme: a woman is deprived of the thyroid extract she requires because of a congenital thyroid deficiency because her doctor husband is jealous. While she doesn’t have the extract, she descends to a pitiful state; when she gets the extract, she is a vibrant, normal young woman.

For years I’ve hoped that there was an equivalent ‘extract’ that might solve MY problems.

Well, I’m getting a chance to try something that may help the brain fog, pain, and energy of PWCs, and the initial effects are very encouraging.

Hope is in short supply when years of nothing helping go by, when the few things that have worked for some people never work for you. I’ve had periods during which I ‘tried things,’ and longer periods in which I ‘manage symptoms,’ something at which I’m a bit of an expert: I can often tell you just what I did that ruined a particular day. Not that I can guarantee a ‘good day,’ but that I have usable techniques for limiting the aftereffects of, say, going to a wedding or taking a visit.

‘Limit,’ ‘manage,’ ‘survive,’ ‘cope’: these are the buzzwords.

When something comes along that might help, my response is skepticism plus cynicism.

Well, I’m trying this one (megadoses of B1 – thiamine). It was time for another ‘try.’ And I will report back.

Pros and cons.

Cheap. Readily available at the local health food store. Non-toxic at high doses. Swallowable. Fast acting. Non-prescription (and no, I didn’t even check with my doctor – I told you not to follow my example – see DISCLAIMER above).

Information came from the INTERNET (gasp! horrors!). Self-administered (‘person who doctors self has a fool for a patient’). Anecdotal. Based on a very small Italian study of people who had ulcerative colitis (which is apparently treated by megadoses of B1) AND CFS, and improved. Improvement is not the same as cure. Very little information available.

OTOH, a small improvement in anything is a great boon for anyone who limps along with very little. 20% improvement would literally be a godsend.

Other considerations right now

Anger: if it turns out all I’ve had these long years is a B1 vitamin deficiency (the functional equivalent of beri beri), I am going to be very mad that someone didn’t figure it out by now. My kids – who have left home – deserved better in a mother.

Not talking to the doctor: I realized I know so much more about my disability than she does. A lot of anger there, too.

And the final one: publicly participating in Internet Hype, as I’m doing when I post this.

But dammit – a little hope goes a very long way.

And because I’m a writer, I shall write about it.


Details will be supplied if there are future posts.

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4 thoughts on “The B1 bomb: an exercise in hope for a writer with CFS

  1. jlknapp505

    Writers write. My friend Sonja posted a comment on Facebook this morning, and my reply to her was essentially what I just posted.
    Selling, or even gaining readers, is secondary when that bug bites. The longer you wait before you tackle that next revision or new chapter, the more anxious you get.

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    1. ABE Post author

      We TRY to write. Against all odds, it seems sometimes.

      Blogging is a separate thing from writing fiction – I don’t have it figured out yet, and the audiences may not even overlap. But I do love putting words down.

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    1. ABE Post author

      If you are a legitimate person, you should know that your short message – and URL – got you caught in the spam bucket until today. Usually I delete all – this is the first time in thousands of comments I’ve rescued something from the spam filter. I took a chance.

      You should follow this subject of B1 at Health Rising http://www.cortjohnson.org/blog/2013/07/19/the-high-dose-b-1-thiamine-supplementation-survey-fibromyalgia-chronic-fatigue-syndrome/
      and http://www.cortjohnson.org/blog/2013/07/05/is-simple-relief-from-fibromyalgia-mecfs-found-early-reports-spark-interest/,
      and look at the original post from Karen about the whole thing at http://www.prohealth.com/library/showarticle.cfm?libid=18187.

      The only data I have is posted in the comments of the first link (including mine), and on a private Facebook page, which you could join if interested: Hunter Hopkins Center’s ME/CFS/FM Private Chat Room

      I will be posting on this blog when I have more data. So far so good, I’m up to (and plan to stay at for a while) 2000 mg.

      I’m taking 0-2 naps, feeling reasonably well, and still digesting my own data and that from the Facebook group.

      I am not an expert – don’t know very much except that I seem to be better, significantly, and will be keeping it up for the foreseeable future. Still nowhere near ‘normal.’

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