As a family of four, three of us have been diagnosed with Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). Myself, my mother and my younger sister. My mother and I were diagnosed in 1991 when I was aged 12 and she was 39. My sister became ill when she was 15/16 years old in 1998.
Obviously this is has been a tragedy of indescribable proportions for us as a family. My sister and I have (so far) had our youths and young adulthood stolen and our mum was not only struck down in the prime of her life but has had to watch both of her children suffer horribly, directly as a result of CFS and also due to society's attitude towards it. That we are certainly not the only family to be in this horrible situation is certainly no comfort. I would not wish this illness on anyone. According to recent research you are almost three times as likely to develop CFS yourself if a first degree relative is a sufferer; even a third degree relative with CFS in this study meant being twice as likely to be a victim than if there was no family history of the condition1.
So it is becoming clear that there is a genetic or heritable component to CFS and it is common for multiple family members to be affected.
What got me thinking about this subject today was the fact my sister has recently been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). What this means is that when she stands up her heart beat becomes very rapid. An increase of 30 beats per minute (bpm) is used diagnostically - my sister's has repeatedly been tested as jumping from 60 bpm when lying down horizontally to 150bpm when standing! POTS is reported to affect upto 40% of CFS patients2 and is generally seen as a form of dysautonomia (dysfunction of the autonomic nervous system), meaning the autonomic nervous system becomes incapable of regulating heart rate and blood pressure correctly. An alterntive explanation for POTS in CFS is that people with CFS have mitochondrial dysfunction which results in reduced energy production3. The muscles are big consumers of energy and the heart is the most energy hungry muscle of all. The reduced energy production therefore results in a weak heartbeat, which means diminished blood-pumping capacity. A normal number of beats might therefore be enough to maintain critical bodily functions when lying down but when standing the heart has to compensate for its weak pumping by beating at a much increased rate.
Getting back to my point after that little meandering explanation. The three of us have CFS but my sister has POTS and my mum and I do not. So I started thinking about other differences in our illnesses. I for example, have allergic tendencies, suffering from hayfever and generally high histamine levels, and also suffered from severe Multiple Chemical Sensitivity (MCS) for a number of years. Neither my sister nor my mum have/had these issues. Finally, my mum suffers with terrible abdominal bloating, pain and cramping as her standout problem. While my sister and I also have gut symptoms they do not manifest in such crippling pain.
Of course we all have the core symptoms of ME/CFS including physical and mental fatigue, exercise intolerence and post-exertional malaise, chronic muscle aches, headaches, cognitive difficulties, and sleep disturbances - but I wanted to highlight the fact that even within members of the same family - Chronic Fatigue Syndrome can manifest in very different forms.
It would be interesting to hear from you if you have CFS and have family members also diagnosed with the illness. Also if your experiences of the illness differ in terms of prominent symptoms. Please leave a comment below...
Best wishes for future health and happiness!
1. Albright F Light K Light A Bateman L Cannon-Albright LA (2011) Evidence for a Heritable Predisposition to Chronic Fatigue Syndrome BMC Neurology 11:62
2. Low PA Sandroni P Joyner M Shen WK (2009) Postural tachycardia syndrome (POTS) Journal of Cardiovascular Electrophysiology 20(3):352-8