Discussion in 'General ME/CFS News' started by George, Jan 11, 2010.
Slide: Worst Case Scenario
Slide: Light research on PEM
Our job is to help sustain this interest.
Dr Batemans advice to her CFS patients (she has 1000) is to remain patient, and flexible. Trust that Science will bring the truth.
The "best" test still needs to be established.
Slide: Light research on PEM part II
Slide: Light research on PEM part III
Nice screenshots Kim! After not being able to turn off security software and restarting computer and trying again - I'll just follow the screenshots. Beautiful - I'll definitely use these I love Light's research.
Lucinda Bateman has a very nice voice.
That last slide is super exiting research about post-exertional malaise. They're going to send the 50-60 (?) patients who participated in this study and had these results blood to test for XMRV.
She's talking about this as a marker for CFS and if not it's a marker for fatigue. It can be demonstrated that there's pathology that correlates to reported symptoms. YAYYYYYYYY!
Important to know that the graphs Kim has just posted are all on the SAME scale - for healthy controls, for CFS patients, and for people with MS.
It is a measure for symptoms.
Its such great stuff. The CFIDS Association helped fund it actually. I love Dr. Bateman's demeanor -very calm, very settled - very objective. Love your signature CJB. Those graphs are UNBELIEVABLE. CFS patients are like Mt. Vesuvius. Interesting that MS patients were so low given they suffer from mysterious fatigue as well.
Wow, that is so impressive! I'm glad that this kind of research is making progress, if only we knew how to speed this along to make some kind of test available for everyone.
The problem with this research is that its really cutting edge; there's nothing comparable to it anywhere else except for FM. Because he's breaking new ground it takes awhile for the research community to catch up. (Sometimes a long while). The key is getting him funding, funding and funding and getting other groups to replicate it. They did get a good NIH grant a couple of years ago - pretty unusual for CFS
People who recover after a few years may not be connected to XMRV (she's speculating) although they're connected to many of the other viral players in CFS.
She's answering questions about testing. She hasn't tested one of her patients yet. She's anxious to know which are positive and how their symptoms correlate, but doesn't think the test is reliable enough yet.
And she has over 1000 patients.
Asked if these findings pertain to fibromyalgia -- bottome line - don't know.
big big thank you
Best guess. Reliable test should be available within a year.
Suzanne Vernon says the blood supply task force is currently looking for XMRV - if it turns out there is indication of infection there the provision of a standardised test will be accelerated.
Hasn't tested anybody! That tells you something.
You can also try a Google Site Search
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