I'm so glad it's Friday! This week has been exhausting...so exhausting that I'm too tired to write about it... I can feel a crash coming on (the lymph nodes in my neck have been hurting like crazy the past couple of days), but I felt the need to write a quick update.
I'm being considered for a couple of CFS research studies.
I don't know if I'll actually get chosen, but I'm excited about the prospect. I've never been a research guinea pig before, but I'd pretty much do just about anything (productive) to help advance CFS research.
The two research studies I'm trying to volunteer for are the Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome through Georgetown University and a CFS genetic study through the University of Illinois at Chicago.
I've been in touch with both research groups and will be participating in a couple of initial screening interviews. Here's hoping!
Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, pain in neck lymph nodes, asthma attack, diarrhea; active eczema on left and right underarms, left hand, and right ankle.
Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6
2 comments:
I falled sick with CFS/ME in October 2007. As part of my diagnosis research and to make sure that I had no multysclerosis I had a lumbar puction in February 2008. It was the most stressfull experience in my life. Most neurologist and algologist don't know that CFS patients have problems to close their injuries, because their blood is too thin. After two blood patches and 2 onths in bed with an leakeage of spinal fluid my injured closed. I still have low pressure in my spinal liquid, which may mean that there is still some very minor leakeage. I was told by the CFS/ME doctor who treats me and is number 1 in CFS research in Europe, that lumbar poction is an necessary mistake in the mayority of CFS patients. It is only justified when there are evidence that the virus has reach the brain. This only happens in a small minority of patients.
Thank you for your comment. I am sorry to hear of your difficulties with the lumbar puncture and CFS/ME.
The risks of having a lumbar puncture are certainly not pleasant and are even a bit scary. However, if I am selected for this particular research, I am willing to take my chances in order to help further CFS/ME research.
It is my understanding that the researchers will be using a smaller needle to do the procedure and are taking other added precautions to minimize the chances of having any sort of problems. Of course there are still risks involved, but I'm hoping for the best.
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