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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.
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So, get off your bums and butts and go to the Facebook page: http://www.causes.com/causes/511536?m=f042604e
jspotila,
I did not say that you said or believed the CAA enabled the CDC. It is clear I said that many believe the CAA enables the CDC.
"The CAA works to expose, protest and correct CDC's misguided CFS research program".
These are your exact words from your last post so I cant see how you can say I have taken you out of context. It appears that you are confirming that the CDC has a misguided CFS program. Please can you give us some major bullet points on how the CDC program is misguided and ask Suzanne Vernon and Kim Mclearly to put their names to the statement and pass it onto the press.
hi Jspotila,
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:
Quote
"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:
Quote
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):
Quote
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:
Quote
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.
They add:
Quote
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
the illness.
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??
Cort,, we've never spoken. Your points are always well spoken, well thought-out. The enmity directed at the CAA is neither arbitrary or without merit. Still, you may be right. So. On those points where the CAA can correct its image without jeapordising relationships -as you have I believe alluded to - let them speak now. Directly. No parsing of words. Let's see them take a stand where their stand is in question. Now. What is wrong with that? They are supposed to represent me. Us. Let them demonstrate that they do. Not in terms of ambiguous histories; rather, in responses that correspond to and resonate with today's concerns with them.
So is this thread open again? Cort it seems many who do not share your beliefs on the CAA feel the same way about engaging in the dialogue with you. And you very well know there are MANY.
Secondly is there any point putting questions to you that you will not answer and when it suits your admin they just close down discussions without any warning, justifiable reason, or rules being broken taking away the members right to reply. Why is the CAA such a protected species here especially as you have stated that you don't agree with everything they do. This is the very reason suspicion is raised about the touchy nature of the admin here towards criticism of the CAA and on many other issues usually to do with perceived treatment issues like the LP etc.
There is so much sourced information on the major flaws of the CAA in every thread that has been discussed here.
The fact is that so many people do not trust Susan Vernon purely down to her track record of negative issues, poor communication on oxford criteria studies and the fact she was instrumental in shaping the CDC policy for two decades. When trust is broken it is broken. There is no point you telling us the things you perceive to be positive about the CAA whilst sweeping under the carpet all the negative issues that have been raised hundreds of times on various threads here.
Why do you think that nearly every discussion on the CAA here ends up being you against practically everyone else? Whether you like it or not the CAA has a PR (public relations) problem and PR forum is often percieved to have a CAA problem. If you do have close contact with the CAA maybe it would be a better use of your time telling them to work on building up patient trust again so that people dont think the main players are on a gravy train they are worried is coming to the end of the track.
Well, no. I will not specify as it has already been done in the thread banned and I cannot , well, I cannot. Way too late and tomorrow...That tide is long out to sea. Nor are you a call center from the Philliipines where you refer to a script; rote does have its place, but here, not so much. I am older than you, more experienced than you, at least in some regards. When I ask of you for answers, give me answers, not pablum. But you I don't want. Send me, send all of this forum, the answers from the CAA. This forum is their crucible, no? Cort? Just let them unveil their positions, good or bad, but they should be the ones removing the cloak, not you.
Well, no. I will not specify as it has already been done in the thread banned and I cannot , well, I cannot. Way too late and tomorrow...That tide is long out to sea. Nor are you a call center from the Philliipines where you refer to a script; rote does have its place, but here, not so much. I am older than you, more experienced than you, at least in some regards. When I ask of you for answers, give me answers, not pablum. But you I don't want. Send me, send all of this forum, the answers from the CAA. This forum is their crucible, no? Cort? Just let them unveil their positions, good or bad, but they should be the ones removing the cloak, not you.