She was born by caesarean and aged 6 weeks was diagnosed with a milk allergy after constant crying and screaming. She was fed on Soya milk, but by age of 2 was weaned back onto cow's milk products as directed by the GP.

 Samantha suffered many collapses and hospital was not an uncommon place. They said glands!!! Because of constant ear infections Sam seemed to live on antibiotics. Aged 3 she saw a neurologist and had an EEG. Nothing showed up. We changed GP when Sam was 5 because our original doctor wouldn't refer her to a ENT consultant.

Aged 5 1/2 Sam had a tonsils, grommets and adenoids operation.

She seemed fine for a while but soon started complaining of head pain and blurred eyes. Migraine was diagnosed and tablets given; all to no avail. Aged 7 Sam was still collapsing and also suffered agonising knee pain, diagnosed as "growing pains". These were so bad I pushed her to school on my bike. Frequently Samantha was sent home from school in pain from head, legs etc and was often near to collapse. We seemed to be in the surgery every week because I was concerned that something wasn't right. All we seemed to hear was "VIRUS". That wretched word!!

Aged 10 she suffered severe back pain. She had an MRI scan which was fine. Then she saw a rheumatologist. After 2 appointments he said, "There is something else going on  ...good bye".

Sam by this time had given up her hockey, netball, country and Morris dancing and was becoming imprisoned at home.

Next she was sent for a CT scan because of head pain. Nothing showed up...but still she was ill and getting worse. Collapsing at home was frequent and ambulance trips to hospital seemed the norm for us .Once they thought she had Cushing's disease and wanted her in the next day A doctor phoned me and said his superior told him all was fine and they didn't need to see her again.

Desperation had already set in but this was hell...thinking Cushing's was the reason for Samantha's problems wasn't nice BUT we thought we had a diagnosis.

We didn't. Our GP asked "Why do you want a diagnosis ...it wont alter anything"!!!

Secondary school age came and Sam looked lovely in her uniform. She struggled so hard but was regularly sent home by 11 am...it was horrendous ...and scary. Each day we prayed that this was the day Sam's health would change and she was able to complete a day........

Each time I took her to GP who was a different doctor again. He said, "School phobia", "low pain threshold", "pull yourself together Samantha", .etc.

It broke my heart because I knew she was so poorly.

After one term of struggling Sam hardly returned to school .We visited the doctor's weekly. I stamped my feet at times and demanded to see a doctor...only way to be heard. Our GP prescribed anti-depressants for pain; when they didn't help he prescribed valium for a week. All to no avail.

 Samantha was suffering ear pain so severely most of these years together with agonising joint pain everywhere ...intermittently: when jaw pain kicked in and no one would listen I got angry.

 I am sure I was labelled by the surgery as an older, neurotic mum.

 Nevertheless, I insisted on seeing a GP. One day a doctor actually said she had TMJ-(temporal mandible joint dysfunction) and sent us to ENT who prescribed ibuprofen, paracetomol and codeine TOGETHER 4 times each 24 hrs. Sam was like a zombie BUT STILL IN PAIN so we quickly stopped that and sought help elsewhere.

 A chiropractor moved her jaw a bit and it helped a little for a short time. He also worked on Sam's back but she reacted so badly that he refused to do more work saying her body wasn't clearing the debris as it should. He referred us to a private dentist re. the ear and jaw pain. Some £500 later Sam still suffered.

 Back to GP and a row resulting in a referral to >>YES >>a psychiatrist ...aghhh!!!

 We went and were surprised to meet a young lady who was CFS friendly and immediately diagnosed Sam. She didn't push treatment.

 I asked for a second opinion and she immediately referred Sam to a paediatrician. When we saw her she also diagnosed CFS but preferred M.E as the title. 

 Sam saw the psychiatrist monthly for about 6 months. She sent her for CBT. Sam went twice and was so angry at how it belittled her that we never took her again. The psychiatrist was fine about it. She continued to tell Sam that she should go out when able, even if only for a coke or to a school concert for as long as she could cope with. She was one of the few psychiatrists who I think knows something about the reality of M.E

 Samantha has now been out of school, starting the 5th year. School have let her down big time ...I had to contact home tuition dept. after 12 months of being sent home or at home. School said they didn't know how to go about it. Since then Sam has been let down big time. Attendance sheets have been altered so that they show she wasn't off for 15 days in a row. Matron has been banned from contact by deputy head because she was supporting us and Sam too much etc, etc.

 Sam isn't bedridden now. She was for months and almost blind. I did everything with one candle for light. She needs a wheelchair to go out and very dark sunglasses, is sensitive to sprays and smoke, perfume etc.

 Sam has a home tutor for 5 hrs per week but is very isolated. She sees no-one and school have let her down so much. These days we just plod on. I guess that's because we have learnt and know more and realise that calling doctors doesn't help. So often I have been told, "Can't home visit, can you bring her to surgery?" ...it's heartbreaking.

Samantha is 16 soon, and heartbroken that she isn't in school and with her class.  She wants to go to the prom next year but cries because she has no-one to go with. There is much more to M.E than just the symptoms that we can relate to. There are so many more worries inside the sufferer's head and heart due to the way they have been treated.

 There is also so much more in the carers/parents heads and hearts ...to understand you have to go there.

 Samantha's mum (I have missed out some issues, but to put them all in print is upsetting and tough. It's such a nightmare...and still our children suffer and lose out. Heartbreaking - and a disgrace in the year 2005).