User talk:Tekaphor/CFS research

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Hi tekaphor,

I have ony just discovered your CFS Research page and are impressed with the work you have done, particularily as you say you are not a sufferer or supporter. Usually such effort only comes from those going the extra mile in trying to understand, and perhaps to convince sceptical doctors. Anyway I can see a lot of potential in what you have done to date. As a researcher I did something similar in CFS part time over 10 years, ending about 5 years ago. Before the advent of Pubmed, when all the research had to be done physically at my local medical library There is a lot to be said for reading the whole paper, not just expecting the abstract to reveal all. This effort led to a series of hypotheses on the nature and pathogenesis of CFS, I have a number of papers on CFS which are published, yes in the peer reveiwed literature. I still have a series of such papers that I am seeking funding for, that led me in much the same direction as the CDC. My own conclusion, for what it is worth, is that the condition(s) pathogenesis is attributable to neuro- endocrinology. I don’t see much here about it here because it is largely unstudied, in relation to CFS, although I expect the CDC to go in that direction, I would not presume to include my work here myself.

What you have begun to prepare is what you correctly call research, or rather a research tool. I think that is needed badly in trying to access and understand the growing volume of CFS papers and as a way of grouping them as a first step. I know Wiki frowns on OR but a listing of others findings is hardly that. What researchers need and I think patients and supporters too is a reference link to findings based upon known symptoms and signs. Which could then be extended to include other findings. But symptoms and signs are what people feel and know about and what research and treatment must eventually address. It would also be a first level aid to research to find the common threads. Now that is where I get fired up pure OR and I readily admit I am guilty of such, only in Wiki is it a crime! Summary papers or reveiws are fine for Wiki articles, but for research they are usually avoided, because they often are written from one perspective, when it is the odd gem of a paper overlooked as trivial in a review that can give real leads to researchers. Any science can be valuable in that quest, and regardless as to whether or not it meets some gold standard. When I last counted there were about 84 different symptoms, but I know there are more. So it is no mean task, if you really want to take it on, it will be useful. More commonly researchers summarize their own discipline or perspective, so it is hard to find sources with all the findings, generalists are rare.

I am fairly new to Wiki, so I don’t know the alternatives for where to place such material, the main article is too long as I have already commented, I would like to add more myself, but hold back for that reason. It also seems a couple of medical scientism pundits I have already crossed, have followed me there, and although they will undoubtably reduce the content, the methodology of applying a pharmaceutical mantra standard to an area of developing science, as sport, I find reprehensible. I dont think in the end it will improve the Article, except to their mindset. The gems I mention may be lost, so hence I anticipate the need for a separate collection of material, such as the one you have begun. Maybe Wiki is not the right place, but I cant think of a more accessable place outside of the cloisters. I hope you are not put off by the reductionists, and a series of linked Articles is probably the next best solution, for CFS. From what I read in discussion consensus for this willl not be easy, any suggestions as to how I might start? Jagra 01:54, 22 July 2007 (UTC)