Chicagoland Area CFS/ME Doctors

[Cubbies2016]

Hi,

Its been awhile simce I last posted. I have seen 3 different doctors and all 3 have said to me "I guess this is CFS." All 3 have said in diagnosis letters that I "claim to have fatigue, cog fog, sleep issues, etc.". No one steps forward with a diagnosis in the 12 moths of going to them. As a result, my work disabilty has cut me off while Im sill sick. If anyone knows of any CFS doctors that can diagnose and treat please let me know. I live in the Chicago area (west suburbs). Thanks. Up until this year, I never have been unemployed and have had a happy life.

 

[Little Bluestem]

Anyone?

 

[Cubbies2016]

I find it amazing that in a city as large as Chicago that no one can suggest a doctor. I have tried on the CFS Facebook sites too. Like I said every doctor I see says they can treat CFS, but dont feel comfortable diagnosing it. I think some doctors can make a lot of money by simply googling how to diagnose it. Its all they need to know as there is really no treatment.

 

[Valentijn]

I find it amazing that in a city as large as Chicago that no one can suggest a doctor.

There's entire countries without any ME/CFS doctors. It's not at all unusual for even a major city to have none.

 

[Cubbies2016]

With millions diagnosd with CFS you would think the rest of the world would catch on. Even SSDI recognizes it.

 

[Cubbies2016]

I just hung up with a doctor named Dr Nick Kouchis in Woodridge. His number is 630-244-7656. He said he diagnosis, and treats CFS. I found him on the CFS doctor website http://fmcfsme.com/doctor_database.php. Most of the doctors liste don this site actually dont reat CFS. They treat Fibromyalgia.

 

[Little Bluestem]

Please let us know what you think of him when you see him.

 

[JayS]

It's not enough for us to be as sick as we are. We have to advocate for ourselves, raise our own funds for research, and educate doctors--those who are willing to listen, that is. A 'CFS specialist' with an unfamiliar name is, unfortunately, just as likely to follow the CDC/Mayo line and be worse in the end than a physician who doesn't know much about the illness but is willing to listen without creating a hostile environment leading to defensiveness. We can bring a lot of good papers to open-minded doctors, but too often we end up arguing as though it's a legal case and that never works, regardless of what signs and symptoms we present with.

Chicago's just too big a place for there not to be a knowledgeable and patient-friendly doctor. There's no easy way to try to explain why the CCC & ICC are valid & Fukuda really isn't, but when faced with a reluctance to diagnose, some of Lenny Jason's work is probably most helpful, and David Tuller has a few pieces that cover this as well on Virology Blog. There has to be a name on the old Co-Cure good doctors list? It may be offline but should be accessible through the wayback machine. Best of luck.