Re: CBS News coverage of UMDNJ CFS/chronic Lyme spinal fluid study

[Guest guest]

wow...that's encouraging. At the very least it will be nice to have the illness recognized and its sufferers not scorned as head cases.

The worst is when your own spouse or relatives dismiss it, or give you pep talks about "just getting over it" and "getting on with your life" or being upset when things don't get done quickly enough. My ex mother-in-law compared CFS to knee pain she'd had and told me that you just have to buck up and get on with it. And my brother-in-law, a doctor no less, suggested my symptoms were due to childhood sexual abuse (which never happened). I can't be angry at people who are speaking from a position of complete ignorance, but it sure would be nice to forgo the need to justify yourself everytime you fail to function at a high level. Honestly, I'd like to see anyone function as well as many PWC do, while feeling as lousy.

In my case, I've stopped trying to explain anything; about my infections, about lyme, about mold, about CFS, but that has turned me into a hermit of sorts. But being alone is easier than constantly trying to explain what you have and then being corrected, or told to use an amazing supplement (which you've already tried). It's defiinitely not easy to expect understanding from acquantances when your own spouse can't wrap his head around your illness. I suppose, in my case, that's one reason he (and his family) are ex-es and he has found a new improved model for a wife, one who isn't sick. (I pray neither of them ever gets it, since I know the odds are much higher for people who live with CFS patients.)

And of course we can't forget all the lovely physicians (not to be confused with healers or care-givers or diagnosticians) who charge us money to tell us we're just depressed and should see psychiatrists. I wonder how long it will take for the light bulbs to go on with them? There are still doctors who believe ulcers are a result of stress, not infection. About 50% still treat their patients on that assumption. What's it going to take for docs to realize we PWC really are sick and not crazy?

Most of the time it feels like a mountain we're climbing, but all the news that's been coming lately seems to finally offer some hope that we may reach the summit one day, and if we're lucky, at least catch the view...before we die. :-)

I know I'm singing to the choir here, but onward and upward!

penny

From: Al Melillo <melillo3@...>Subject: [infections] CBS News coverage of UMDNJ CFS/chronic Lyme spinal fluid studyDate: Thursday, February 24, 2011, 4:14 PM

Video about CFS/chronic Lyme spinal fluid study done by the Universityof Medicine and Dentistry of New Jersey.----------------------------------------------http://www.cbsnews.com/video/watch/?id=7357544n & tag=related%3Bphotovideo%3Ftag%3DfacebookNew study on Chronic Fatigue SyndromeResearchers have found protein indicators that could be a result ofChronic Fatigue Syndrome, a disease often dismissed by some medicalprofessionals. reports on the promising study.