Hi all,
I am a new member and newly diagnosed, posted my introduction and story
Since I felt I had this disease I've literally read hundreds and hundreds of blogs, forum threads, web sites etc. and literally ALL of the research papers and clinical trials and literature related to CFIDS to educate myself and fully understand how to attack this disease and fully recover.
I don't want to make a negative post and maybe it's been said before I am just writing this to reiterate to people to BEWARE.
As a biologist and scientific researcher of many years one thing that struck me is the shear volume of totally incorrect/wrong information and advice given by forum members who clearly don't completely understand what they are writing and have ideas/make assumptions/make decisions based on this completely incorrect information, i.e. they didn't totally read or understand the research or got partial information and are extrapolating based on that or are just passing on wrong information without researching and finding out the truth themselves.
This is not good as I see so many people base their treatments on advice of what to try from others. I know it is hard to know which people are passing on correct information or not but let me tell you how many times I seen people say to do something based on some "fact" they know when in truth the fact is totally wrong, it could be the opposite of what they think or not true at all.
I am a new member and newly diagnosed, posted my introduction and story
Since I felt I had this disease I've literally read hundreds and hundreds of blogs, forum threads, web sites etc. and literally ALL of the research papers and clinical trials and literature related to CFIDS to educate myself and fully understand how to attack this disease and fully recover.
I don't want to make a negative post and maybe it's been said before I am just writing this to reiterate to people to BEWARE.
As a biologist and scientific researcher of many years one thing that struck me is the shear volume of totally incorrect/wrong information and advice given by forum members who clearly don't completely understand what they are writing and have ideas/make assumptions/make decisions based on this completely incorrect information, i.e. they didn't totally read or understand the research or got partial information and are extrapolating based on that or are just passing on wrong information without researching and finding out the truth themselves.
This is not good as I see so many people base their treatments on advice of what to try from others. I know it is hard to know which people are passing on correct information or not but let me tell you how many times I seen people say to do something based on some "fact" they know when in truth the fact is totally wrong, it could be the opposite of what they think or not true at all.