Person with ME

Age: 14

Diagnosed: 2005


David first became ill in October 2004, aged 11. Doctors thought he had Addisson's disease, although he was diagnosed with a really rare skin condition called P.L.E.V.A. 
In March 2005 David started to become more ill, it was then put down to an unknown virus. Of note PLEVA can be caused by the Epstein Barr Virus which is also noted to be a possible cause of ME, although David was never diagnosed with this virus. 
David never really picked up from then. He was a bright, articulate little boy and had completed and passed his 11+ and had commenced Grammar School.  He did have a vaccination around this time.  He loved Rock climbing, took the Irish National Champion Title in Jujitsu in 2002.  He was a member of the boy scouts for years and loved trampolining and going to the cinema with his friends.
From March 2005, David started to find it increasingly difficult to manage in school. There was a repeated cycle of sending him to school and then the school would phone to say he was ill and I would have to go to the school to bring him home.  He started to deteriorate from then and ended up in hospital for a few weeks, test after test and as usual everything came back clear.   He was referred to a rheumatologist and she said he was fine and to send him to school.  I was dismayed by this as me and my family could all see that David was a very physically ill little boy.
I can remember around May 2005 David had started to complain of severe chest pain.  The only way I can describe David's pain was like someone having a heart attack on a nightly basis, his colour changed drastically going grey with white lips.
In desperation my sister asked the consultant paediatrician she worked for to have a look at David and he was referred to a consultant anaesthetist. David was re-admitted to hospital for a nerve block into his chest, but the doctor was unable to do this as swelling had appeared on the right side of David's chest.  He had an urgent bone scan which again came back clear.
David was finally diagnosed with M.E in October 2005.  We thought we had struggled before, we were unaware that really David's battle with ME had only just begun.  He started to get all different symptoms ; severe hallucinations, memory lost, concentration difficulties, aches and pains all over his body, unable to wash and dress himself, problems with his stomach, mouth ulcers, headaches, sleep disturbance.  The list goes on and I am sure are well known to all his fellow sufferers.
Home tuition was put in place I think around the end of Feb 2006, I was anxious that David did not miss out on his education. Initially this was three afternoons a week. In hindsight and with the knowledge I have now this was too much for David to cope with and therefore had to stop.  His sleep pattern had completely reversed, with him being up all night in pain and eventually getting to sleep at 7am and then sleeping most of the day. 
Today things have not greatly improved. Pain is a constant in David's life and a challenge for him, his struggle continues.
This story was written by David's mum and dad, who continue to fundraise for ME Research.