Monday, 19 April 2010


I watched the above video this morning on Laurel's blog Dreams at Stake.

Those with ME/CFS often have difficulties describing their illness in a way that others can comprehend, I thought this was such an excellent video. The song was Everybody Knows about ME, thanks to Cinder Bridge. The video was put together by Phoenix rising forum.

My diagnosis of ME/CFS turned out to be Lyme Disease and on long term antibiotics I have my health and my life back. So many other blogs I read, the symptoms of ME/CFS are so similar to my own and others with Lyme Disease. An earlier post I did remarks on an e mail I received from a ME/CFS specialist who says research shows more than 30% of patients with ME/CFS actually have Lyme Disease. However some seem to have Lyme Disease and not respond well to antibiotics clearly there is something else in the cocktail of infections that needs addressing, hopefully the recent research on XMRV will help many more patients struggling with chronic ill health.


  1. An excellent video Joanne.

    Like you my daughter was misdiagnosed with ME when it was Lyme Disease. She seemed to spend half her childhood watching life pass by outside the window.

    One of my abiding memories was the last day of each term. She was never at school on that day, always worn out and stuck at home.

    We lived in Church Street. On the last day of term everyone went to church for the end of term service, they all filed past our house. Earlier on in her illness they would look at her through the window and some would wave. When they sent her to Coventry, she still watched them but they did not look at the windows of our house. That hurt a lot.

    Music sometimes expresses how much all this hurts. When Mamma Mia played in the cinema, I found myself in floods of tears as a certain song I had never heard before played. My youngest daughter looked at me gone out. It was this song:

    To me I lost half my child's years of growing up. Somehow the words in this song express the loss that I feel and that can never be put right.

  2. It is the children who suffer that saddens me the most and also makes me so angry that our Health Authorities are misleading our doctors and patients into living with chronic ill health when there is treatment that can and does make patients better.

    Your daughters story is a very sad one, although for her there is a happy ending, the scars will always be there for her and her family.

    It is good that you do so much to raise awareness and help out other families who are trying to find their way through the mess that medicine, thanks to discredited IDSA Guidelines, is making of Lyme Disease treatment.

  3. I am sorry but the comments on this post are not working properly.

    Carol I had hoped to allow your comment but it seems to have been lost so I will reply to you anyway.

    I am so sorry to hear you are not very well and that you are wondering if you could be suffering from Lyme disease. You will see the links on my side bar that take you to the ILADS guidelines and Burrascano guidelines do have a good read before discussing with your doctors. There is a symptom list in Burrascano Guidelines which is worth reading.

    If you really do think you could have lyme and your doctor is not very knowledgeable about it then check out the local charities where you will find Lyme literate doctor that you could see.

    If you want to e mail me privately my e mail is in my complete profile on the right hand column.

    Because I lost your comment that means I have also lost the link back to you and so I am not sure which Carol you were to get back to.

    Best wishes in finding something that helps you.

  4. I saw this too...glad you posted it. So much suffering for so many....