Why are you here? The reason is the same for all of us. Either you or someone you care for is sick, so you're looking for something, anything to help. Maybe it's MS, CFS, ME, FM, Lupus, Alzheimer's, unrelenting fatigue, pain and inflammation, or something else. You might be desperate because you're up against a wall built of words like incurable, untreatable, and of unknown origin. Perhaps a cutting-edge medication has been tried and failed. With the media full of news about medical breakthroughs, you're frustrated that a meaningful treatment has not been found for your illness. You're thinking that surely the answer lies somewhere out there in the vast body of knowledge that makes up modern medicine...someone just hasn't connected the dots yet. You surf the internet and find websites offering support and education on the illness. You read articles about research and new treatments. Much of it is written in medical-ese, and you may feel overwhelmed, even handicapped in your ability to milk the meaning out of the information you find.
I am a caregiver and care advocate for my husband who has a degenerative illness. I have no medical background and I'm cyber-challenged. If, like me, you're stubborn enough to keep struggling with all those research and treatment articles, and if you can make any sense out of them, a bigger picture emerges. When you step back to assess the various bits of information collectively, you will find a gaping hole. Something huge is missing. The problem is that most of the current research and emerging treatments focus on "tinkering" with the disease process, not on addressing the root cause of the disease. Why is that?
Things they forgot: Entertain some what ifs with me. What if research into the disease had been underway for several decades? What if, in those early days, research efforts were concentrated on finding a microbe as the villain? After all, the immune systems of the people afflicted with the disease seemed to be attacking something that shouldn't have been there. What if, after no infectious agent was found, the research community embraced the theory that the body sometimes goes nuts and attacks itself via a defective immune system? What if this interesting autoimmune concept led researchers into some limited success in developing drugs that "tinker" with the immune system to some benefit for some of the afflicted some of the time? Limited success is better than no success. What if herd-mentality caused a stampede of researchers in one direction? What if, in the meantime, there had been advances in microscopy and lab techniques that might have enabled those early researchers to find what they had been looking for? What if the majority of the research/medical community had somehow lost track that the model of autoimmunity was an unproven theory, and they had comfortably incorporated it into their thinking and efforts as though it were a given fact? What if new technology applied to old ideas could result in the hope of treating the disease at its core rather than just "tinkering" with the disease process?
My husband's illness has been rubber-stamped as autoimmune. Like you, I was searching, and like you, I am a relative newcomer to this website. Most of the material on cpnhelp.org is very understandable, but you will eventually run into unfamiliar medical terms and processes. Advice from other users, resource tips gleaned from their blogs, and my own experience have helped me develop a system for digesting the cpnhelp.org material and for understanding the medical-ese I encounter elsewhere on the internet as I investigate my husband's illness. I'm offering you a shortcut. Please let me help you in your quest to get the most out of this website, lits linked websites, other websites you are already visiting, and those you will visit in the future (especially those research articles).
Once over lightly - Follow the advice on the Homepage by reading Cpn Simple and The Basics Page in the Cpn Handbook...go back to the Handbook and skim through the sections concerning treatment just to know what's there. Be sure to read the disclaimer and privacy statement.
Prepare to go deeper - Very simple, free, not much time, and so worth the effort.
- If you think you might want to try my system, print it and keep it handy.
- Build a small foundation of knowledge and understanding. I can't emphasize enough how helpful this is. After you do it, you'll want to revisit those research articles that were so befuddling.
- Click on this: http://health.howstuffworks.com/immune-system.htm. Read each short section. Print it and keep it handy. You will use it over and over again.
- Click: http://en.wikipedia.org/wiki/Inflammation#Characteristics. Read the entire page with particular thought given to the dysfunction aspect of inflammation. Under the Outcomes heading, see if you don't recognize "collateral damage" as it's called by the military. Print it and keep it handy.
Read the entire Homepage again.
Read the Handbook.
- Read it all the way through or click on the topics in the Table of Contents found on the left side of the screen to read specific information.
- Use the glossary on the left side of the screen (you may need to use the up/down slide bar to locate it).
- Some terms in the Handbook will be marked with a highlighted " i " at the end. Click on the " i " for a definition or a comment about that term.
- For terms not found in the glossary, minimize the active cpnhelp.org page by clicking its identifying tab in the bar at the bottom of the screen. Then go to medterms.com, wikipedia, or even howstuffworks.com (it's good, but has its limits). You will discover other resources to use for the same purpose.
- After reading the definition(s) on the other websites, minimize the resource page(s). Keep these resources at the ready in the bottom bar to pop up for future use. Then click the appropriate bottom bar tab to restore the cpnhelp.org page.
- You may want to print the entire Handbook for portable reading. Follow the printing instructions on the introduction page, especially the part about The Table of Contents. A printed copy of the glossary is a good take-along aid as well.
Visit other cpnhelp.org resources by clicking the tabs found at the top of the screen. The Patient Stories are sure to be a favorite resource.
Find out what the website users are blogging about by clicking recent posts on the left side of the screen. If you spot a blogger that may be of interest because you suspect you have an illness in common, click on that user's highlighted name. This will take you to a window where you can track other comments made by that user.
Navigate your way to the older posts; they are still new to you.
Search for a specific topic in the Search slots located in the upper right and lower left sides of the screen.
Check out what's happening on the right side of the screen. Click around here and there and you'll soon become an expert navigator. You will eventually want to participate, or perhaps you will want to go where only a user can go. Welcome aboard, it's time to REGISTER!