Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Its like a chicken and egg scenario; its been thought that they believe they can't get funded - so they don't apply. Was that true?
:
patient advocate charlotte made a very strong and good case for how absurd the make up of this panel was (dentists?)...my learning from this: we need to establish a diverse patient committee that meets regularly, ongoingly, and face-to-face (or phone conference call) with NIH officials. Now...i see only gains from such ongoing meetings. no down side.
Since 1946, our mission has remained clear and timely: to see that NIH grant applications receive fair, independent, expert, and timely reviews -- free from inappropriate influences -- so NIH can fund the most promising research
Increase the transparency, accountability, and uniformity of NIH peer review, so we can effectively and efficiently achieve our goals
Cort, I don't know how you can say this. Didn't you just write some things about how bad the problems were with grants being unfairly rejected? I've been hearing it for 20 years and I don't think the researchers are crazy or stupid or liars.
I may want to revise my earlier opinion about "a few duds" not being so bad, in light of Jim Jones' latest effort in CFS research, "Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study." The only appropriate response to that kind of garbage is to gag. I don't want him in a position to encourage or allow or, especially, fund any more of this pseudo-scientific nonsense.
Another view
We can also look at it another way. How do you change the view of individuals who are preset? Shut them out? Or do you include them so they hear the correct viewpoints? Maybe this is an opportunity to have more direct influence.
Tina
Good One. You are so wise!
Lynn
Getting a root canal would be three steps up from the CBT
An extended concept of altered self: chronic fatigue and post-infection syndromes.
Jones JF. Psychoneuroendocrinology. 2008 Feb;33(2):119-29. Epub 2007 Dec 26.
Chronic Viral Diseases Branch, Division of Viral and Rickettsial Diseases, National Center for Zoonotic, Vectorborne, and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.
Abstract: Sickness behavior in active infectious diseases is defined here as the responses to cytokines and other mediators of inflammation as well as the adaptability of a pre-existing integrated immunological, psychological, neurological, and philosophical self. These complex behaviors are biologically advantageous to the afflicted individual, but they also impact surrounding individuals. If chronic conditions, such as chronic fatigue syndrome or post-infection fatigue, exhibiting these behaviors follow infection in the absence of ongoing changes in immunological self associated with an active infection or subsequent injury, they are currently considered illness states rather than true diseases. Self-referential recognition (interoception) of bodily processes by the brain and subsequent unconscious and conscious adaptive responses arising in the brain, i.e., in the endocrine system and immune systems, which are initiated during the infection and would normally lead to positive maintenance, may become maladaptive and lead to an "extended altered self state." Exploratory measurements of such alterations using a "top-down" approach such as monitoring responses to appropriate challenges can be obtained using functional brain imaging techniques. Once identified, processes remediable to biological/pharmacologic and/or psychological intervention can be targeted in directed trials.
Department of Psychiatry, Vanderbilt University School of Medicine, 1500 21st Ave, South, Nashville, TN 37212, USA.
Abstract
OBJECTIVES: Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects.
METHODS: Patients with POTS (n = 21), ADHD (n = 18) and normal control subjects (n = 20) were assessed for DSM-IV psychiatric disorders and completed a battery of questionnaires that assessed depression, anxiety and ADHD characteristics.
RESULTS: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.
CONCLUSIONS: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability.
Gulf War Illness (GWI) is a complex disorder affecting nervous, endocrine and immune regulation. Accordingly, we propose that GWI presents with a distinct pattern of immune signaling. To explore this we compared interaction patterns linking immune markers and their evolution during exercise.... This potentially heightened lymphocyte and HPA axis responsiveness to IL-1 stimulation in the context of a mixed Th1:Th2 immune signature supports an autoimmune component in GWI etiology.