Friday 20 July 2012

The Tilt Test

This sounds intriguing. And it is. One of the first innovations into ME research that I learned about when I crashed again two years ago. Much research and discovery had happened since my last crash. Even just ten years previously when I had crashed seriously before we could find no help which would give an ounce of positivity towards recovery. A bad time I had experienced between 2006 and 2008 appeared to be so focused on moving house, coping with changes in the family situation that we put it all down to stress and poor control of the Epilepsy- in hindsight it was so definitely part of the ME spiral I feel a fool to have not searched for related support then.
So the Tilt Test is something that has been established at Newcastle University. The idea is to monitor severely affected ME patients- those who are bed bound, possibly with support through intravenous drip and stomach feeding tubes. These patients will be put on a bed, which is tilted daily. Only by increasing the time and angle of the tilt over weeks and months will the body slowly be able to sit upright and eventually stand. The dysfunction of the autonomic nervous system- a physical dysfunction- causes such problems that the essence of this test, slow and monitored pacing, is essential. For patients who have been in these situations for years at a time and whose family are round-the-clock carers this is a revelation. Nutrient intake is carefully monitored as is body temperature and blood pressure and every other possible monitoring test you can imagine. As soon as the body shows signs of stress, the tilt is reversed and clues are noted so the next daily tilt can be finished before stress arises.
How did this help me? At this time I was dizzy from standing and needed head and neck support while sitting. I recognised the tilt concept in myself. If I walked anywhere I would hold onto someone's arm, or use furniture, door frames and walls around the house as an extra support (using a walking stick or frame put pressure on my arms and wrists which just did not have the strength to keep me upright)
By discovering this and realising that the researchers around the world were discovering more and more about the physical reasons behind the illness I found hope and began to believe in recovery. I also found reasons for my illness and began to understand the symptoms which had just happened and confused me for so long. I didn't feel so often that I was flailing in the dark and grabbing at anything that came within reach.
I began to stand up by the bed everyday. I tried to walk through the house without holding onto things- this didn't work, I had too much belief! So I was starting to stand, but that was about it. What I was encouraged to do was investigate further. I found ME Research and discovered how much they had contributed to the world of modern ME treatment. I also found books to read (some of which were still down in the doldrums and insisted I would be ill forever!) and discovered the Optimum Health Clinic and learnt a lot from their FreedomfromME YouTube videos. Freedom from ME is a possibility and I encourage anyone who is connected in any way with this illness to start searching. It took me 18 months from finding Professor Newton in Newcastle University (as energy levels and brain fog dictated my research!) but I found more and more, better and better solutions. The sooner the research starts, the sooner some kind of relief will be felt.

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