My current preoccupation is my forthcoming appointment with the CFS expert. One of my personal requirements in order to go there with an easy mind was a phone appointment with him in advance in order to go over my concerns. (My concerns being the general survivability of the hospital enterprise.) If I can get this done soon, it makes it that much more likely that the admission will go ahead as slated at the end of March. I’m OK with that. Below are notes for the questions I may want to ask him, but if they’re unclear you’ll just have to decide for yourselves what they mean because I haven’t got the spare energy for typing more.
1) Is there an omega point of CFS? (Or do only fatal diseases have an omega point?) I.e., can I die of exhaustion? What is the worst that can happen?
2) The CFS sufferers who are completely immobile and spend their lives fed through a tube and drained through a catheter: how did they get to that point? Was it, for instance, by making wildly overambitious trips to the National Hospital for Neuroscience and Neurosurgery? :)
3) Is ME vs CFS a genuine distinction? (I was looking at the Hummingbird Society’s ME vs CFS chart, which I suspect is probably bollocks, at http://www.hfme.org/comparisonchart.htm)
4) Does mitochondrial dysfunction always entail delayed fatigue?
5) Can the NHNN investigate the cause of my exercise intolerance?
6) National Association for M.E. and other people say SPECT scans are useful?
7) Is what Vicki Cook [CFS recoveree and coach] said true about people without carers don’t get bedbound?
8) Would I recover if I just stopped spending all day looking at computer screens?
9) I read about meningococcal encephalitis causing mitochondrial damage? Is this just in the brain, à la Parkinson’s etc?
10) Plea for drugs to help me cope with anxiety, insomnia and pain before-during-after admission (I was hoping for zopiclone and tramadol as I have tried these on a one-off basis and found them effective and without side effects)
11) Tramadol experiment (to break the circuit of inflammatory vicious circle) ?
That’s all for now. See you later…