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A slight case of ME/CFS

It’s back, and with a vengeance! I had my first bout of ME/CFS 21 years ago only in those days it was just called ME.  Three months ago I had comparable attack. This post is basically a copy of a summary that I’ve drafted for my GP explaining my current symptoms.  This illness is no laughing matter.  It destroys your life.


I was bed-bound for about three months 21 years ago through ME; I was able to work part-time after four months, and largely recovered after twelve.  Over the following year I recovered my remaining food tolerance and stamina.  In the last 20 years, I have had perhaps a dozen CFS 'echoes', usually triggered following a virus attack and increased stress at work.  These produced similar though somewhat milder symptoms that I could largely manage through bed-rest and diet restrictions; however recovery was typically quite quick and I was able to work from bed after perhaps two weeks in the worse of these and fully recovered within 1-2 months.

In the run up to this current attack over this last two years I have had a general decline in my health.  I lost two molars through abscess and one of these was followed by an extremely painful two-month-long jaw infection.  (Think of bad tooth-ache for two long and continuous months. The only upside was that at least I replaced the teeth with implants.)  I was also plagued by early-onset cataracts in both eyes, which lead to my having cataract surgery mid-2007.  Even so, up the end of 2007, I was still within general fitness norms for my age (for example my wife and I would routinely do a 6-7 mile speed walk at the weekend).  Perhaps a factor in all this was that my job involved a lot of personal stress, which is itself another story, and not one for here.  Then I started to suffer from viral conjunctivitis in November, followed by a short bacterial conjunctivitis infection (and this was quickly treated by antibiotics).  However the viral conjunctivitis is intermittently a problem.

In early December I had a flair up of gingivitis around another two molars and my dentist prescribed a two week course of amoxicillin, followed by a 6 week course of Periostat (a low dose Doxycycline treatment).  Towards the end of this second week course mild CFS symptoms started to show themselves, and I treated as one of these mild echoes; so I decided to discontinue the Periostat, after consultation with my dentist.  By the 22nd I thought that I had pulled through the ME echo, and I went for a routine walk with my wife.  After a few miles I knew that something was badly wrong: I just ran out of energy and my balance was off. By the time that we had got back to the car (after ~4 miles) my body had basically crashed, kicking off the full CFS symptoms.

Current Symptoms

Over the last 3+ months, my symptoms had been fairly flat though in some areas I have had improvement.  I would describe them as follows:


Comparison with my 1980’s Attack

In my first attack I had acute headaches for a lot of the time and I was yeast, dairy and gluten intolerant which made my diet difficult.  The main site for my cramps was in my legs, and my temperature control was very poor.  And of course the illness was new to me and largely unknown to the medical professions.  My low point was definitely lower, but looking back I feel that my recovery was steadier. 

This time, my diet, etc.  have posed few problems; the cramps have been in my upper body, and I have had fewer headaches.  I am also familiar with the illness and its management.  Technology (laptop, Internet, DVDs etc.) also helps to alleviate the boredom. So this attack hasn't quite plumbed to the same depths.  On the other hand I feel that my mental confusion has been worse and the recovery is far flatter.  My wife and I disagree on which of these attacks was worst, so I guess that the two are broadly comparable. 


I believe that my work environment and associated stress factors led to a slow collapse of my immune functions and general burnout in the few years prior to my illness, which in turn opened the door to various infections and triggering the CFS/ME.  Looking at the general trend I feel that this episode will ultimately prove worse than my first attack 20 years ago. 

I feel that my mental function (and therefore hopefully my immune function) is now recovering thanks to this enforced break, and despite all of the other stress factors.  Hopefully, over the next few months this will start to manifest itself in my physical well-being.  Nonetheless barring miracles I will not be fit for work in the foreseeable future.

To date my employers have been tolerant, but I think that this will change at some point and this is going to involve some lifestyle changes for my family. 

The primary healthcare system is likewise tolerant, but is unable to offer active support: ME is that least now better understood than it was 20 years ago, but there has been little or no effective progress in its treatment.  Any recovery has to be found within me and with the support of my family.