Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 20, 2012.
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Is Dr. Newton doing ME/CFS research using a CCC cohort? This study used a CFS (Fukuda) cohort: “Chronic fatigue syndrome and impaired peripheral pulse characteristics on orthostasis-a new potential diagnostic biomarker (2012).”
Again, interesting! And, again, my readings don't really fit her data. Though my autonomic tests were very abnormal, it was my parasympathic system that was in overdrive--with, according to the testing--my sypathetic trying to compete with it.
I also had very variable BP.
And, functions that should have been controlled by one, were being controlled by the other. I guess the one thing we can say is that most of us have abnormally functioning autonomic nervous systems.
For anyone interested, a long list of funders were mentioned in the Frith et al. (2012) paper:
Medical Research Council, ME Research UK, Irish ME Trust, John Richardson Research Group, CFS/ME Northern Clinical Network; None of the funders contributed to the design, performance or interpretation of the results of this study."
Interesting Sushi..I remember Staci Stevens saying she wasn't really sure what to say about the autonomic nervous system functioning in ME/CFS except that it was screwed up and that the system didn't really know which way was up
I'm of the opinion that these observations are consequences of the underlying pathology (a compensation if you will), rather than the central cause.
That all certainly arent my case as its working for me completely different to that.. my autonomic system variablity is very abnormal but in the opposite way to what she's saying with the lower variability. (I suffer from higher variablity with massive shifts)
I do have severely overactive sympathetic nervous system (note.. too standing.. things are low otherwise) . A specialist told me I have SNS dysfunction years ago due to this.
The study you describe, Cort, also used a CFS (Fukuda) cohort. But Dr. Newton's new MRC grants would seem to be ME/CFS research. Does anyone know what cohort she'll use in these new studies?
The Newcastle CFS Clinical Service is referred to here as the Newcastle ME/CFS Clinical Service, and here as the Newcastle CFS/ME Clinical Service. Dr. Newton's 2010 study reports that greater numbers of patients were referred to the clinic following the NICE Guidelines. A greater proportion of those patients were found to be CFS (Fukuda) patients and 40% were subsequently found not to have CFS. ME Research UK comments:
I sure hope somebody can come up with a standard most can agree with...The CASA project should be looking at the definition question. I would guess that many ME/CFS researchers would agree to using the Canadian Criteria at this point...it they could get their grants approved with it. The latest Program Announcement for the NIH for the first time left the definition open - it appeared to allow grants using other than the Fukuda criteria...
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