Newly Diagnosed? Resources for Living with Chronic Fatigue Syndrome

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), or ME (Myalgic
Encephalomyelitis) is a terribly debilitating disease that has affected the lives of millions of people.

Characterized by utter fatigue, neurological symptoms (memory problems, concentration problems, etc.), non-refreshing sleep (including the ability to fall asleep), pain, headaches, and the ever-present post-exertional malaise, CFIDS is truly a hodge-podge of multiple symptoms. Diagnosis is often made by ruling out everything else!

If you've just been diagnosed with CFIDS, here is a list of resources for you. I will never forget what my diagnosing doctor said to me - "everyone and their brother's cousin will know someone who got better from CFIDS with abc product. Don't believe it - too many people are sick with this and if there is something that works, you'll hear about it in the news, on discussion boards, and from your doctors." Please keep the faith that you can get better, that they will find a cure or treatment for us in our lifetimes. In the meantime, educate yourself!

The CFIDS Association of America is a great starting place.
They have a comprehensive website, with sections on About CFIDS, Patient
Resources, Professional Resources, Community, and Patient Advocacy.
They provide a free newsletter, and a plethora of resources for newly diagnosed, the long-term patients, and everyone in between. Truly, this is a one-stop shop for excellent information.

The National CFIDS Foundation is important for learning about research, treatments, and education.

Here's another big information site:
http://www.cfids-me.org/

For stories by people with cfids (PWCs), there are several resources:
http://wwcoco.com/cfids/
http://www.cfids.org/sparkcfs/stories.asp

and there are many discussion forums on cfids - the best one I found is at about.com

http://chronicfatigue.about.com/

For learning self-help tips, you can't beat this site:
http://www.cfidsselfhelp.org/

For news on CFIDS, please see:
http://www.cfidsreport.com/Links.htm

There is a listserv devoted to news and medical articles pertaining to CFIDS. I signed up years ago - here's their link:
http://listserv.nodak.edu/archives/co-cure.html

Are you pregnant, or thinking of getting pregnant? I joined a cfids/pregnant listserv 7 years ago, before I had my daughter. Although the list has been slow lately, newcomers are always welcome. Check the yahoo group, cfidsorfmspregnant2.

And there are tons of books out there - the first one was Osler's Web, by Hillary Johnson. Here are some others on my bookshelf:

Olson, C.T. (1993). The life of illness: One woman’s journey. Albany: SUNY Press.

However you cope - please know that you are not alone. The internet has made the world much smaller, and much more accessible for those of us that are ill. Reach out!