I agree that Mayo Clinic's record with CFS and FMS is less than stellar and I don't trust them. I have no answers, but here are a couple of things to think about:
1. How many of you have had a Neuropsychological evaluation?
My Neurologist sent me for one, after his initial exam showed some evidence of brain damage, ie. I had a positive Rhomboid, an abnormal QEEG and an abnormal BEAM scan. He told me it is the most thorough and affordable way to find out if someone has brain damage, to what extent, in what areas, and if it can be treated. He was appalled that I'd had a serious closed head injury in a car accident causing unconsciousness, but had never been evaluated by a Neuropsychologist to see if I had brain damage.
The exam takes about 6 hours, spread over 2 days, so you don't get totally wiped out. I'd been feeling much better than usual, and was sure it would be yet another normal test result, making me look like a nut case. Wrong! I scored as severely brain damaged. My scores were so bad that my government disability revue was changed from once every 3 years to once every 10 years, which I am told is almost unheard of.
Where this gets interesting is that the Neuropsychologist told me that my brain damage was in the right areas to have caused all of my problems, including what was diagnosed as fibromyalgia, migraine, Lyme Rage, dysthymia, etc.
He also told me that in his opinion, even though I met the diagnostic criteria, I did not have CFS! He told me he had seen Neuropsych evaluation results on many, many CFS patients, and that they all have a distinct pattern of brain damage that is unique to CFS and only CFS. He felt this pattern was so unique that he said he felt he could pick out and diagnose CFS patients just by looking at their test results, without even meeting them or seeing their other medical records.
What my doctor said is strictly anecdotal of course, but if this is true, then research could be done to replicate this and it could be a definitive diagnostic tool. It would not be that expensive to do either, since this type of testing uses no expensive medical equipment. Neruopsych test results show physical brain problems and any secondary psychological problems arising from the brain damage. There is a bias towards the physical as cause, rather than the other way around. I noticed this welcome difference right away, since I used to be a Psychiatric Social Worker before the illness knocked me out of the work force.
2. How many of you have had your neurotransmitter (NT) levels tested?
I have, by an M.D. who practices Integrative medicine. I was told by him that NT levels change from moment to moment, because every thought we have changes them. Despite this, he said research has shown the most consistent levels can be obtained from urine at 10:30 am, so that is what we tested. My dopamine was too high, which explains the horrific manic reaction I had to the dopamine raising drug Welbutrin, my GABA level was too high, which was logical since I take benzodiazepeine drugs, and all the rest were in the basement, well below normal. The dismally low serotonin level I had would be a physical explanation for my secondary dysthymia, for example, but could I change that over time with positive thinking? I've had no success with that after many years of meditation and visualization, but I have a melancholic temperament genetically, since both my parents did, and I think that is a variable here also. At this time, it is believed that we cannot change our genetic temperament to any great extent.
I am not implying anything here, since I get more confused the more I think about it, but am offering up this anecdotal info, FWIW.