MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Does anybody know of any more sites for dialogue or info on MCTD?????
For information, I do not think there is any central source that is reliable. And that just sucks-- it makes me crazy.
The best way to learn about this illness is probably the hard way: Take a basic research and writing course at undergraduate or graduate level if you haven't already. They probably have one in most nursing, medical and psych program, and you could audit it. Find out the difference between a "p" value and an effect size.
Then, I would learn about all the tricks that researchers play with data. Do NOT trust information simply because it comes from a respected hospital. I covered a few common research problems in the post here "Good Sources vs. Bad." The website "Boring Old Man" taught me a lot-- the founder passed away, so the site is inactive, though all the information is still there; it's hell to dig through.
Learn about conflict of interest, HARKING (Hypotheseis After Results Known) and p-hacking. This will teach you the tools for ferreting out bad research that's just done to sell drugs or shill for some particular hospital or therapy-- unfortunately, at least 50% of medical research is just total crap, though some specialties are worse than others.
Then, you can google to find peer reviewed sources that are published-- New England Journal of Medicine, Lancet, Rheumatology (the periodical) etc. And you will have the tools to start to form good ideas about what those articles mean. For example, if someone says that 25% of people with MCTD develop pulmonary hypertension, what population did they look at? What variables did they control for? Who did the study and who was paying for it? (We are lucky in one sense: There's no money in rheumatology, so fewer people try to get rich selling quack therapy to MCTD patients. But it's still important to ask these questions, etc.)
Unfortunately, many articles will only be available through EBSCO or other professional websites.
And tell us what you find and the conclusion you reach. Generally, the news you get from reading research directly is better than what you'll read on most hospital websites, which tend to make MCTD sound a bit worse than it is.
Mary Ann