The following was sent as a comment to my previous post. I have decided to copy into this post because we need to know that there are some amazing success stories once the cause of ME/CFS has been diagnosed and treated correctly.
Many thanks for forwarding this about your daughter and sharing it publicly, we have had many a private chat about your daughter's ongoing good health and her experiences have helped many a ME/CFS sufferer to get themselves properly assessed for Lyme Disease through an expert and get on their road to recovery.
ME SUCCESS STORY
For me this is a sad time. I think of Kay Gilderdale and the hell she is going through. It is hard to know just how many sick young people there are with an ME diagnosis who are just left to rot away.
My child was a young teenager when she was diagnosed with ME. She had already been ill for a number of years by then. She only ever had one lot of blood tests carried out on her right at the beginning of being ill. We were told it was post viral blues.
Once the ME label had been given it became carte blanche for the medical profession to metaphorically shrug its shoulders however ill she became. Somehow it was HER fault that she was ill.
What really struck me was that in spite of the advice from the ME charities that in time with rest she should improve, she in fact deteriorated year on year. I was made to feel responsible for that, because she had pushed too hard and done too much - in fact she had done pretty much sod all.
What child in their right mind would go from being fit and active to lying in bed for days on end. My daughter had lots of friends and hobbies, she was always busy. She had a great time.
She lost all that because she couldn't manage to do anything apart from going to school when she could. She would have done anything to be more normal, but she couldn't do it.
In the few months before we got a proper diagnosis she was far worse. I was pretty convinced she had neurological ME. I used to look at the 25% ME website. On the front of that site there was a young woman - it was Lynn Gilderdale. My teenager looked just like her. Neurological ME frightened me. Seemingly nothing can be done for it. I felt that we were facing a terrible chasm. She was in bed nearly all the time, noise and light sensitive and her swallowing reflex was no longer working properly.
Thank heavens I was told about Lyme Disease and was able to find a doctor who didn't just think, without testing or examining her physically, that it was in her head. She had lots of tests, some very basic, which should have been done by her GP's who didn't care, and these showed how ill she was.
As Joanne says there are doctors out there who are finding that a good proportion of ME patients have an underlying viral or bacterial infection. If these are addressed then improvements are possible. At the very worst the decline in health is very often stopped which in itself is quite something.
Getting well was not easy, but worth every bit of the hard work. She is now fit, well and leading a normal life. Without the diagnosis I dread to think where we would be today.
Again as Joanne says don't just accept that there is nothing to be done, trawl the net and educate yourself. Increasingly this is what people are doing and quite a number of people who had been written off medically are doing much better when they embark on treatment.