An ME Carer’s View
(from our Journal of IiME Volume 1 Issue 2)
The following is a true story told by the parent of a child with severe ME. It should be emphasized that this was a an ongoing experience of one family – happening in the UK in 2007. The name of the child has been changed for this story.
Our daughter Rose got the flu when she was nine, in 1998, and never really recovered from it. She saw different doctors and had scans and blood tests.
One consultant said it was idiopathic pain syndrome which our GP said means "I don't know".
At this time Rose was unable to climb the stairs – she went up and down stairs on her bottom. They also mentioned school phobia - had Rose been bullied or was she too clever for school?
Rose tried to carry on at school for a while. The physio she was seeing advised her to walk to and from school. She would arrive home with her face white and fall asleep even at dinner.
Over the next few years Rose got worse. In January 2001 Rose fell to the floor and was not able to walk again. My husband took her to the doctors as she was unable to eat or walk. The doctor said that the best place for her was in school.
Then we were sent to see a psychiatrist who felt Rose should be seeing a consultant paediatrician because she had started to drink excessive amounts.
He was kind but didn't know much about ME. A registrar told us that Rose had ME/CFS and they would speak to the consultant.
We went to many meetings at the hospital. The local team kept giving Rose physio and hydro. Rose got worse. She was given lots of different therapies - even art therapy.
We were told that if we went against the professionals we would have a Child Protection Order (CPO) served on us.
By 2003 Rose was bed bound and on a NG Tube. She saw a new consultant who was nice and did listen to our concerns when we met him. Over the next 3 years whilst going back and forth to the hospital, for two lots of five week stays Rose was made worse – what with the travelling, noise and people in and out of Rose's room, with nurses that had never seen severe ME before and who could not understand that Rose could only remember what was happening on the current day. Her memory became so bad. She was repeatedly asked questions she could not answer. This upset Rose a lot.
She was paralysed over her body, fed by NG Tube and was sensitive to light, noise and touch and in a lot of pain.
By April 2006 Rose had a PEG fitted after a four and half month stay in hospital, following emergency admission, during which I stayed with her all of the time. As with Rose’s memory problems, she would not know me and from the experience of previous stays, the hospital staff would not give her medicine on time.
She was in terrible pain all of the time and not receiving her medication made her worse. I was called an over-protective mother at times.
By the time we left they wanted Rose to go to rehab, though my husband and I didn't want this for Rose. We felt we were not being listened to.
After one meeting we agreed to visit three places in
order to show we were willing to have a look, but we
reduced this to one place as Rose's consultant was
retiring. We visited this hospital but we felt it was not
suitable for Rose.
"The consultant said that the some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome)."
In the summer of 2006 Rose started having blackouts and no feeling in her arms and this progressed slowly up her arms and legs. At the moment she has no feeling above her knees and elbows.
The consultant then referred us to another consultant who felt we could go and meet. But this never happened. After this things went along quickly. What was happening in the background seemed to be out of our control.
The new consultant came to visit Rose and after this there was another meeting which was organised with Rose’s team. The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome).
We went home to find out what PRS was and all the people in the meeting did the same. We felt very angry about this diagnosis of PRS. Yet people couldn't understand why we felt this way and didn’t understand why it mattered. It matters to us after reading about it.
After all, the psychiatrists Rose has seen over the years had never mentioned this to us.
So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities. This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week.
Then there were low activities which would be performed all day. This consisted of someone reading to Rose, listening to the radio, chatting with someone or listening to the TV in the background. If she was watching TV then it had to be turned off after a certain time and then listening to music on Cd player.
After the six weeks we were told that Rose did not
have PRS as she never got worse during the six weeks.
"We were told that if we went against the professionals we would have a Child Protection Order (CPO) served on us."
We felt those 6 weeks were a nightmare. We prayed every day for Rose not to get worse during this time. The timetable continued after the 6 weeks and when I asked what would happen if Rose got stuck on 25 minutes the reply was that she must be scared of going to school.
Rose has not been to school since she was 11 years old (seven years ago)!
We got to 20mins on the timetable and the pain and light sensitivity got worse. She kept getting infections.
We eventually stopped the timetable. If we had kept going Rose would have been made far worse.
We are now doing our own plan for Rose - most of it taken care for by Rose. Now we are left trying to find an adult consultant for Rose - one who understands severe ME.
I wanted to tell Rose's story as the phrase PRS still makes feel sick.
One member of Rose’s team mentioned a couple weeks ago that they had forgotten who this was all about!!