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A not so slight case of ME/CFS – one year on

Well it’s a year since my CFS illness came back to haunt me, and unlike my attack twenty years ago I can’t say that I am now over the worst of it.  The dilemma that faces all CFS patients in the UK is that the NICE guidelines wrap the following policy in a lot of nice English:

In other words, once your GP has classified you as a CFS sufferer, all diagnosis and treatment stops.  You are on your own other than the offer of psychological support in the form of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), which might help some sufferers in some phases of the illness, but they are irrelevant in terms of addressing any underlying biological causes of the illness.

So last June, I contacted a ME/CFS specialist practitioner Dr Sarah Myhill, who offers a lot of good dietary and management advice about this.  And after a couple of months of “to and fro” dialogue with my GP over my lack of progress, I hadn’t really got her ready agreement, but more a reticent acquiescence that I could get some of the tests that Dr Myhill suggested: the Mitochondrial Function Tests and the Fat biopsy for toxins.  I started this dialogue in August, and by this time I’d spend eight months on my back (well perhaps 23 hours a day, with the hour upright hard work and stressful).  I was finding this very grim, especially because of no real prospect of future improvement.

I started a regime of mineral supplements as per Dr Myhill’s suggestion in September.  I found these helpful.  I also bought a Far Infrared (FIR) sauna for sweat sessions and started taking magnesium (Epsom salt) baths, though I often found taking these somewhat exhausting.  Dr Myhill also recommended taking magnesium and B12 by injection as these are often successful at mitigating CFS symptoms in her experience.  Unfortunately my GP baulked at this “unlicensed use” of magnesium and B12 (that is not licensed with NICE guidelines) and was unwilling to prescribe them.  However, after some further discussion, we agreed that she would advise Dr Myhill that she was willing to let Dr Myhill manage my ME without specific reference to any treatments.  So in November, after I had my test results and a lesson on how to do the injections from a nurse, Dr Myhill supplied the magnesium (again an Epsom salt solution), B12 and needles.  She was right.  They really do help a lot; I noticed an immediate improvement in my muscle cramps, stamina and coordination. 

I can now sleep through the night without bloody muscle cramps waking me up every few hours, and my headaches have pretty much gone. I still have a poor sleep cycle as I tend to wake up after 4-5 hours then can’t get back to sleep again, so I tend to split my sleep into a night-time and afternoon sleep.  However, at least I can get 9 or so hours solid sleep a day now.  I am also able to sit up with my family for an hour or so now at our evening meal rather than twenty minutes.  I can actually sit up for a few hours (though there is little point, as I find that I can’t think straight after an hour or so).  Even so, I am a little more independent of my wife in that I can now make myself a cup of tea, etc., without exhausting myself.  OK, I am still spending more than twenty hours a day flat-out in bed, but my quality of life has definitely improved.