Hi, I couldn't think of where to put this so this was the best section I could find.
I'm interested in what the long-term effects of CFS are. There are very, very few studies on the consequences of CFS - there are two studies that followed up people 10 years later but they tended to focus on "recovery" (placed in quotes because the definitions of recovery have been vague) and not so much what medical issues people have had to face. Further, as many of you know, CFS being viewed as a psychological disease has greatly hindered research. It's infuriating that people suffer for year-decades yet there is very little done on long-term consequences. This is unlike almost any other chronic illness. Don't we deserve to know more about our prognosis?
I know lymphoma has been mentioned and possibly heart failure. I'd be interested to hear about this. Are there any diagnoses you received after your CFS that you did not have before CFS? And how were you diagnosed with this other condition? Self-diagnosed? Diagnosed by a health care person? About how long had you been sick before you were diagnosed with other condition? (Anything counts - high blood pressure, diabetes, etc. Point being are people with CFS developing a condition more than expected compared to general population.)
(I know that prior medical conditions you had with your CFS might have been exacerbated but to be clean, I am asking only about conditions developing after CFS.)
If I get some intersting responses, I might be able to hook a researcher into looking at this subject. Thanks!
I'm interested in what the long-term effects of CFS are. There are very, very few studies on the consequences of CFS - there are two studies that followed up people 10 years later but they tended to focus on "recovery" (placed in quotes because the definitions of recovery have been vague) and not so much what medical issues people have had to face. Further, as many of you know, CFS being viewed as a psychological disease has greatly hindered research. It's infuriating that people suffer for year-decades yet there is very little done on long-term consequences. This is unlike almost any other chronic illness. Don't we deserve to know more about our prognosis?
I know lymphoma has been mentioned and possibly heart failure. I'd be interested to hear about this. Are there any diagnoses you received after your CFS that you did not have before CFS? And how were you diagnosed with this other condition? Self-diagnosed? Diagnosed by a health care person? About how long had you been sick before you were diagnosed with other condition? (Anything counts - high blood pressure, diabetes, etc. Point being are people with CFS developing a condition more than expected compared to general population.)
(I know that prior medical conditions you had with your CFS might have been exacerbated but to be clean, I am asking only about conditions developing after CFS.)
If I get some intersting responses, I might be able to hook a researcher into looking at this subject. Thanks!