How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
Discuss the article on the Forums.

The 'Wolf' in ME/CFS: Newton on a System Stuck in Overdrive

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 20, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    651
    Likes:
    1,034
    View the Post on the Blog
     
    Enid likes this.
  2. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,274
    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).”
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    11,232
    Likes:
    14,021
    Albuquerque
    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.



    Sushi
     
    merylg and taniaaust1 like this.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    8,678
    Likes:
    17,015
    For anyone interested, a long list of funders were mentioned in the Frith et al. (2012) paper:
    "Funding
    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."
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,046
    Likes:
    548
    Raleigh, NC
    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 :)
     
  6. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    3,629
    Likes:
    6,438
    Australia
    I'm of the opinion that these observations are consequences of the underlying pathology (a compensation if you will), rather than the central cause.
     
    justy and biophile like this.
  7. taniaaust1

    taniaaust1

    Messages:
    10,087
    Likes:
    8,511
    Sth Australia
    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.
     
  8. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,274
    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:
     
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,046
    Likes:
    548
    Raleigh, NC
    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...
     

See more popular forum discussions.

Share This Page