do you sometimes feel aggrieved by the inner circle of party politics as a volunteer for the CAA who appears to be doing her best. No organisation is beyond justiflable critism from either the inside or the outside on the basis of cherry picking valuable contributions they may have made. This is like commending a government whom have masacared thousands of innocent men women and children in Iraq on a false war premise because they happened to give money to tsunami victims in Thailand.
So exactly why is it that so many experienced and well informed patients have such major grievences with the CAA. Is it for no reason? Are they all wrong?
Exactly Who are the CAA are they some of the volunteers, all of the volunteers or the highly paid executives. Perhaps you would like to check out the following on Dr Vernon, Former CDC Mistress and instrumnetal in helping the CDC to constuct spurious definitions of CFS. The point to make is the utter incompetent stuff that they spout which is so damamging to patients, not any credible work that they are deemed to do. They seem to have a habit of having to undo their own incompetence if the favourable stuff people bring forward on them is measured against the crap they often get involved in. Where was Vernon over the crap UK studies and why did she not rip to shreds the use of the oxford criteria instead of defending it.
How much valuable time is spent by volunteers at the CAA smoothing over Dr Vernons nonsense reimbursed to the value of $174,000 per year. Does it sometimes feel like an episode of the TV show "24" over there?
Original post by DR Yes follows
After looking at the Vernon abstract/proposal in question, and checking the references she gave, I found a lot that was disturbing to say the least. I posted the following over on PR:
There are a number of problems with Dr. Vernon's proposal "Consolidate & Connect CFS Research", but I will focus here on the citation she uses for her statements:
"After almost 20 years of accelerated research efforts examining the pathophysiological basis of CFS, no clear understanding of risk factors or the mechanisms underlying the key symptoms has emerged. These two decades have been marked by significant achievements in epidemiology (4-9) and by some advances in management (reviewed in 10-12). By contrast, the outcomes of pathophysiological research have generally featured delineation of what CFS is not - a muscle disorder, a retroviral infection, a recognised psychiatric disorder, a known autoimmune disorder, etc. Sadly, the endeavours seeking to define what CFS is, have been characterised by false leads and dead ends. That is, innumerable small, cross-sectional case-control studies have failed to support plausible hypotheses of an infective, immunological, neurological, endocrine or metabolic disorder (reviewed in 10, 11)."
Reference 11 is a 2003 review article by Afari and Buchwald in the American Journal of Psychiatry (http://ajp.psychiatryonline.org/cgi/...ract/160/2/221
It is not the sort of article that I think the Science Director of the major patient advocacy organization should be citing at all, let alone as a good review of biological findings in CFS and of helpful 'management' strategies. Consider the following excerpts:
Generalized anxiety disorder and somatoform
disorder also occur at a higher rate in chronic
fatigue syndrome subjects than in the general population
(128, 133–135). In most (130–132), but not all cases (3,
136), the mood or anxiety disorder precedes the onset of
chronic fatigue syndrome.
References 131 and 132 are to a couple heinous articles authored by Wessely and Peter Manu, respectively (Peter Manu was sort of the American precursor to Wessely and company).
By the way, they do provide a gem of a statement (in a good counter-argument, actually):
Although the distinctions between physical and psychiatric illnesses often are not useful or accurate, their differentiation is in part the basis for a diagnosis of somatization.
That one statement sums up so much that is wrong with 'psychosomatic medicine' in general (including the astonishing lack of any science whatsoever in it) and with its application to CFS in particular!
However, they go on to present an argument that encapsulates much of the damaging beliefs that have led to the divide between the majority of ME/CFS patients and some at the CAA, CDC, and CBT/GET advocates in general:
Attributions about the causes of an illness or its symptoms
are important in determining a patient’s response to
the illness (155). Patients with chronic fatigue syndrome
often attribute their illness to physical causes and minimize
psychological or personal contributions (148, 156,
157). For example, compared to patients with diabetes,
rheumatoid arthritis, and chronic pain, those with chronic
fatigue syndrome attributed their symptoms more often to
“a virus” or “pollution” and less often acknowledged a role
for their own behavior (56). Such causal attributions have
been related to an increase in symptoms (158) and functional
impairment (159, 160) and to worse subjective and
objective outcomes over time (161). It is noteworthy that
relatives also tend to attribute the patients’ symptoms to
somatic causes (157), and their beliefs and attributions
about chronic fatigue syndrome, as well as solicitous behavior,
may inadvertently reinforce patients’ illness behavior
(162). Although it has been suggested that somatic attributions
may be a risk factor for the development of chronic
fatigue syndrome (157), at the very least, they probably exacerbate the illness and lead to greater disability.
Individuals with chronic fatigue syndrome employ a
variety of strategies to cope with the debilitating consequences
of fatigue. Overall, several studies suggest that
patients with chronic fatigue syndrome use significantly
more escape/avoidance strategies, compared with healthy
subjects (172), age- and gender-matched primary care
patients without chronic fatigue (173), or their nonfatigued
twins (174). Avoidance strategies, in turn, have
been associated with greater fatigue, impairment, and
other psychosocial disturbances in chronic fatigue syndrome
(175, 176). Thus, while not a cause of chronic fatigue
syndrome, maladaptive coping strategies can perpetuate
I am both perplexed and deeply concerned that Vernon considered this paper an authoritative source for information on the lack of physical findings in CFS and, even more so, on the successful psychosocial approach to management of the disease! Are these views representative of Dr. Vernon's own on CFS, or on the CAA's as a whole??