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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Project ENOUGH!!!

Discussion in 'Action Alerts and Advocacy' started by awol, Aug 11, 2010.

  1. V99

    V99 *****

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    I understand what you are saying about a positive outlook.

    However, what is conservative or radical is always relative. Currently patients are fighting for their rights, but these will not be achieved without tackling certain organisations. It is, after all, those organisations which are preventing research and treatment. It is all well and good to say you stand for something, you must define your position. But who are you talking to?

    Simply, you must be against something if you want something.
     
  2. SOC

    SOC Senior Member

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    Dear me! It sounds like way more mental and emotional energy expended over there than I can afford. :Retro smile:

    As Hope123 said, "... my style is more aimed towards inclusion rather than exclusion. I do know however that social movements usually take a variety of tactics from conservative to radical to work."

    Good luck to you all. I hope you achieve your goals.
     
  3. jspotila

    jspotila Senior Member

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    For starters:

    The Association's position on the CDC program and empirical definition: http://cfids.org/cfidslink/2010/010607.asp#2a

    The Association's efforts re: the recent revisions to the CDC's website on CFS: "The CFS pages of the CDC's web site were updated in late July and the updates have drawn negative attention and deep concern about information presented to the public and the health care community. The CFIDS Association and other organizations have contacted several CDC staff in an effort to reshape the site to reflect a broader knowledge base and greater accuracy. Updates will follow."
     
  4. Levi

    Levi Senior Member

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    Operant conditioning

    There are too few collective resources to allow for these types of internal conflicts among CFS/ME/CFIDS supporters. What is needed now is consensus rather than finger pointing. No one really knows why the CDC does what it does. It just does. In my book, any support org like CAA may be forgiven for trying to work along with the CDC and get results. It least for a decade or two.

    Here is one possible explanation; the powers that be at the CDC have by complete accident been operantly conditioned to react to any explanation for an organic basis to ME/CFS/CFIDS as an intrusion upon their authority, and they react with aggression to any possible evidence that their psychological construct for the disease is wrong.

    See ground breaking research at http://www.physorg.com/news119535403.html which shows that aggression triggers a reward mechanism as strong as food, sex or drugs of abuse:


    These poor scientists have been unwittingly conditioned over time to act as they do and publish these aggressive and unbalanced CFS research articles. After 4,800 of them, they can no longer help themselves. They have become dopamine junkies.

    It is quite possible that CBT may be needed to correct these behavioral anomalies, and I posit that the CAA will be instrumental in the future in helping to arrange treatment for the most severely afflicted CDC researchers.
     
  5. being

    being Senior Member

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    Regarding how the CAA has and continues to challenge the CDC's CFS research program; here are some really good examples. The first is the CAA's response to the CDC's proposed 5 year plan; it's a real doozy. The second is Kim McCleary's testimony to the CFSAC regarding CDC's wasteful spending practices, which is also a pretty damn good piece of advocacy, and the third is a page on the CAA's website that includes these and other links re: CAA opposing CDC.

    Also on his blog Cort highlights and summarizes various CAA responses to CDC projects and proposals including the ones mentioned above/linked to below; in the archives there are at least half a dozen really good posts on the subject. A lot of them are located around the beginning/mid 2009. Again, really good stuff- http://blog.aboutmecfs.org/

    CFIDS Association Response to CDC’s Research Plan
    http://www.cfids.org/temp/research-plan-response.pdf

    October 2008 Testimony by Kim McCleary at the Federal CFS Advisory Committee meeting
    http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf

    Advocates Respond to CDC’s Research Plan
    http://www.cfids.org/cfidslink/2009/070108.asp
     
  6. jewel

    jewel Senior Member

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    Good points, Levi...dopamine junkies in serious need of CBT.
     
  7. aruschima

    aruschima I know nothing

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    hey flxi

    Thanks for your translation!

    You see what I mean? !
    ;)We live in complete harmony and have a lot of fun :victory:
     
  8. awol

    awol *****

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    Suzy, yes we genuinely appreciate these healthy advocates and wish there were more. Thanks for your point.
     
  9. awol

    awol *****

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    love it Levi!
     
  10. aruschima

    aruschima I know nothing

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    Added info on ME/CFS Forum

    Ajj, I forget something,

    The boss Awol, is slightly OCD ,
    She is all about protocol and procedure
    She is really good in organizing!

    I am the rebel (if you did not get it by now)
    I question every thing and every one,
    Go undercover and :cool:
    Talk in riddles and Morse code.
    Very few get me,
    Ergo, I always need translation
     
  11. awol

    awol *****

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    I have to admit that even after flex's translation I still don't understand aruschima's post, however it does seem to be humorous. I will leave it there. As for the bigger theme of antagonism on the forum:

    First of all, all forums have antagonism. Phoenix Rising seems very prone to plants and trolls, and has chosen a moderation style that some object to. The agressiveness here is itself quite distateful and a waste of energy for many people. The forum where Project ENOUGH!!! is being coordinated is quite probably less friendly to the CAA (people are disgruntled), and less willing to give the benefit of doubt to the CDC than this one. However there, the moderation style is different. Noone is prohibited from participating in both, however it should be known that each has its culture.

     
  12. awol

    awol *****

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    aruschima. I am confused about your portrayal of me. Do you know what AWOL means? ;)
     
  13. aruschima

    aruschima I know nothing

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    Awol

    no, but i am kidding, it is humorous and meant in a very loving way .
    See , i do need translation!

    Flexi , where are you ?

    I also suffer a complete disrespect for authorities, in general .....
    Forgot to add that as well.
     
  14. awol

    awol *****

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    Ok, well in that case I will take it as an enormous compliment that you are able to call me boss and say it lovingly. Cheers! :D
     
  15. flex

    flex *****

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    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??
     
  16. flex

    flex *****

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    It is with great sincerity and happiness that I am able to announce the forthcoming joining in holy matrimony of the CAA to the CDC.

    They are deeply in love and this is "their song", come and see their first dance on their special day.[video=youtube;7POawPXZueo]http://www.youtube.com/watch?v=7POawPXZueo[/video]
     
  17. awol

    awol *****

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    This thread explains one of the things we need people for:

    http://www.forums.aboutmecfs.org/sh...-similarly-under-researched-diseases-outreach

    Still floating around in extreme confusion over some earlier posts on this thread, but I am sure it will all be sorted out. The other forum is not about being "against" anything, really, except a psychosocial theory of CCC ME/CFS (and heavy-handed, biased moderation). Rather it is about being "for" solid biomedical research, in particular into the role of XMRV and its consequences - although not limited to this. In this respect, we are not big fans of fence sitters.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    LOL levi, i liked your post.
     
  19. jspotila

    jspotila Senior Member

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    What an odd thing to say. http://www.cfids.org/xmrv/070110study.asp
     
  20. V99

    V99 *****

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    The CDC's attitude is no accident. They had the disease ME right in front of them when the chose to ignore more than 30 years of data.

    CFS was a diabolical creation, designed to mock patients and disguise any biological evidence.

    You are really kidding yourself if you do not understand what the CDC has done.
     

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