Why ME / CFS Charities ?

My daughter, Beth, has had ME/CFS since September 2008, age 12, and has, as a consequence, had virtually no secondary school education. Her private life has been nonexistent, most of the time, and it has had a detrimental effect on the family. There are periods when Beth is a normal child and yet the following day she can be completely mentally and physically exhausted affecting her cognitive functions. This means that it is impossible to plan anything that can’t be cancelled at short notice. Her social life is very limited as she has spent most of the last four years in bed. Not many friends can cope with that lack of contact and sadly move on with their lives leaving Beth behind.

Beth was a happy, healthy, active child until the age of 12. Within weeks of starting Secondary school in 2008, she caught a vomiting virus. She would sit at the window all day, not moving, not reading or watching TV. She would find music and TV hurt her head. She could not focus to read and she had no energy to feed herself or even brush her hair. We could see her face was as white as a sheet and she was clearly unwell. Beth could not sleep much at all and particularly at night she struggled to sleep. We had many medical tests but could find nothing to cause her symptoms. In December 2008 we were referred to a paediatrician who reviewed all the medical results, or rather the lack of results, and gave us a diagnosis of post viral fatigue, CFS/ME. There are no definitive tests and it is a diagnosis of “no other illness can be identified so it must be CFS/ME.” Over the last five years Beth has had periods where she has slowly recovered and returned to school part time, only to come down with a new virus and a relapse of the CFS/ME.

Mike and Beth

The school system is not set up to deal with this condition and most schools and teachers still don’t believe that it is a real debilitating condition. It is estimated that 2% of the school population has the condition, yet very few are diagnosed as there is no blood test to diagnose and most doctors still believe that it is a psychological ailment not physiological. The ME / CFS charities are very underfunded and raising a decent amount of money will have a genuine impact. My aim is to raise funds to pay for research into diagnosis and treatment. Whilst I completely appreciate that there is a need for the caring side, what I would like to do is push hard on the diagnosis and treatment. It would a real breakthrough to just to have a genuine diagnosis.