Posted by Heidi on behalf of Mermie This illness, caused by an enzyme abnormality can be effectively treated by giving very high doses of thiamine which bypass the defect. Here is the good news and the bad news. The good news is that many types of ME/CFS might be treated by finding one or more specific defects in the energy production system and treating it appropriately. The bad news is that there may be hundreds of these potential spots, all of which can end up with a reduction of cellular energy. The research group's job is to research, catalog, and put together these potential mechanisms, figure out how to test people for them effectively with existing medical insurance, and, if a specific defect is found, treat with existing methods. Here is how I would see it working. One, two, or three persons would tackle the thiamine problem described above. They would access the data on line, print out references, find out where the erythrocyte transketolase test could be done and for how much, fax the material to the central collecting person. We would have meetings every once in a while, but the meetings are not essential so even persons with moderately severe illness could participate. Skills required would include sincerity, desire, internet skills, and ability to see the portion tackled through to the end. This is a project with an extremely low possibility of success; it is hard work, unpaid, and will be unappreciated. Most of the work will be via internet and medical libraries. Data will be collected in our office, organized and posted on the web site to be used for free by anyone interested. It might work. We'll think about it. Anyone interested can contact me. ME/CFS/FM is an extremely complex illness and advice in a newsletter may not be appropriate for a specific individual. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.mailto:lynnews@davidsbell.com**wtresearchgrouup!M!
on 8/23/2007, 8:31 am
This can be detected with an erythrocyte transketolase index, where a thiamine pyrophosphate (TPP) stimulation test greater than 14% demonstrates thiamine deficiency.
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