1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    That's awesome Koan! I want us to be like them. Tell us what to do if you know or perhaps you can ask them. I know we're too ill to do a lot of what they did, but maybe we can step it up somehow.

    Cort, I've written the CAA about it.

    We were told that the CAA is listening to us here.
     
  2. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22

    Cort, speaking man to man here, I advise you to take her up on her 'proposition'.

    (TRUST ME, you won't regret it! ;))
     
  3. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Cort, my dearest Me-ite,

    Can you see how this sounds like: shut up, already?

    This is not dialogue and it will not quiet those of us who fear true dialogue is not happening.

    My invitation stands. You are most welcome to stay on the air mattress in my kitchen area. I will, from my couch and with my wee beast on the beach, continue to discuss with you the problems we all face as I see it.

    We may also continue this dialogue on the forum. But, we must not block such dialogue as it arises. We must let it flourish!

    Ok?

    Ok!

    Peace out,
    Koan
     
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,308
    Likes:
    5,633
    Exactly.

    If we're going to present ourselves in a very aggressive manner, then I think we need to limit ourselves to making those claims which are utterly undeniable. If we want to go further than that, then we should be more cautious and modest in our approach.
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Koan I really think you may be misinterpreting my posts. I'm sure there are some people who believe that any disagreement on these issues means I am for CBT or the Oxford definition. I am not for the Oxford Definition nor am I for CBT as an major treatment for CFS. I believe CBT was over represented in SPARKS and other treatments should have been given more prominence. There are quite a few arguments here, though, that I simply do not agree with - this is pretty normal for me (!).

    Basically I think we have more of a disagreement on the edges than a disagreement at the core. My great desire for CFS for myself and for everyone else is for more research that will finally elucidate why my life changed so much 3 decades ago. I think we all want that - that's why we're here.

    Who know maybe I will make it up to Canada some day :)
     
  6. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    You are a mad beast

    and I love you all the more for it!

    with metta to you,
    Koan
     
  7. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Cort,

    It is all in the nuances. This is a battle fought with subtle twists of language.

    I fear you are too trusting.

    Convince me it is not so! Or, take up my offer and really speak to me.

    Peace to you, who are kind and good,
    Koan
     
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    It was an idea...freely delivered and just as freely returned to sender :)
     
  9. flex

    flex *****

    Messages:
    304
    Likes:
    0
    London area
    Cort,

    the point I made about using the Oxford criteria was a reflection of comments (not direct quotes I grant ) made by yourself and Kurt and the fact that Dr Vernon did not take apart, particularly the Dutch study for using them. SHE SHOULD HAVE DONE.

    The comments were something along the lines of "if that's all you got to use then that's what we are stuck with". Again not direct quotes, but close to the sentiment.

    Yes she has worked in the field for twenty years and that means she should know better. She needs to learn to put on many hats in the CAA not just one of a scientist with a track record and certainly not just one that pulls apart the WPI and not the European studies. Its simply not good enough, professional enough or representative of reality.

    Correct me if I am wrong but she spent most of those twenty years in the CDC working under Reeves.
     
  10. Navid

    Navid Senior Member

    Messages:
    411
    Likes:
    58
    not sure if the hiv/aids ppl were noisy before or after causal link....but that was not my point.

    if we wait for a causal link or until we are VERY sure of ourselves we'll all be dead of old age, cancer or heart attacks before any progress occurs.

    look it's been 20+ years and there still are no biomarkers, nor any real treatments for this disease..

    previously robust , healthy, non-depresessed people are told their illness is psychological and to go home, move around some more and take anti-depressants...our own advocacy group provides this as advice to our Dr's.

    In order to get looked at as a serious medical issue patients need to spend 1000's and 1000's of their own dollars to get tested...these things I am VERY sure of.....if we don't get loud and demand fair treatment and research...20 years from now we'll still be sitting here sick.

    Cort... i am shocked by your post to end this conversation!!!!! This is a very robust, balanced, respectful, result-oriented thread...because it is challenging your beliefs about CAA you are asking it to end...once again all i can say is i am shocked...my jaw actually hit the floor when i read what you had written.

    much more heated, offensive, unproductive discussions have gone on for weeks with out this type of comment from you.

    all i, as a person who has really, really enjoyed and valued this board, can say is this is very disappointing.:sad:

    regards, lisa
     
  11. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    We are not always on the computer ready to read posts. The timing of same can be misleading.

    My offer stands. I believe the best in you and always have.

    Peace to you and yours, Cort.

    Koan
     
  12. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Flamed by Cort!

    Let me see if I can respond helpfully. Cort, I have often posted how much I appreciate this forum. It provides a haven of like-minded patients to tell us that we are not alone. It provides a moderated forum, so posters can agree to disagree on many aspects of the science on ME/CFS, without being personally attacked. And it's thanks to you that I and many patients can learn from your forum, and your website. In the spirit of a moderated website however...

    1) I stand by my perceptions.
    2) If something says something unscientific - when it comes to ME/CFS - MY LIFE - I will critique that. If someone in power doesn't act when I believe they should, I'll speak up. This has nothing to do with humility, and backing away in awe from people that you imply I should defer to. If something doesn't make sense to me scientifically, I won't roll over and play dead. I WANT to understand the science! And yes, advancing good, thorough, balanced science so I might have a chance to get my life back is essential to me! Yes, I'll be wrong some of the time. And I'll change my mind when the scientific facts convince me to do so - so you may not lose your house after all. I'm not pushing for Vernon to say (yet) that "XMRV is IT". I'm pushing for a BALANCED SCIENTIFIC CRITIQUE of the XMRV science. Two very different things. ;) But Cort, your suggesting that I would defer to anyone - simply because they have so-called experience is ludicrous. It almost comes across as telling a patient with 11 years of ME/CFS, biopsy-confirmed opportunistic infection, and RNase-L deficiency that they don't know anything about this disease? C'mon. This IS the internet age. And as many wise clinicians have noted, patients sometimes DO know more than their practitioners. That's not heresy. It's a fact.
    Whether Dr Vernon invented the field of gene expression, or is creative or "is a professional" is irrelevant to the issue posed in the missive to the CAA. After all, it's the unquestioning, blind following of certain psychologizers in ME/CFS (after all, they have decades of experience, and are "professionals") that got us into this mess. Thank you for letting me scratch your belly, but I'll follow logic and science.
    Like it or not, I do hugely respect the learning from this patient community and - recognizing that this may be heresy - do place the scientific opinions and insight of many posters here on par with the researchers. I also recognize that any researcher is after all human, and potentially open to bias. You do a disservice to the patient community by implying that our intimate knowledge of ME/CFS... gained both by living the symptoms - and out of necessity by reading and reading and reading... should meekly and automatically defer to that of "professionals". The awe-struck passive mode of submission to so-called authority hasn't served me - or the ME/CFS patient community - all that well. But there's a difference between scientifically calling someone down to the mat, and attempting to ridicule them. In other words, I'll be blunt and honest, but will try to be courteous.

    3) I would welcome Dr Vernon helping us understand where she's coming from.
    After all, as you said yourself, she's been silent on this!
    No, her silence doesn't tell me anything, although it certainly opens the door wide open to conjecture. Did she want that? That's conjecture too. Not helpful. Silence just add isn't all that factual. The whole point of my posting is to challenge her to illuminate us - and indeed the scientific community -with a balanced critique of the science on BOTH sides of the pond!

    4) Does the "Easy Route" serve us best?
    C'mon Cort... you're often SO "on" when you stick to the science. You can do better than challenge me to have some humility. Show your mettle: why not ask Dr Vernon directly to address the flaws across the pond? Why in heaven's name are you automatically "concluding that she knows what she's doing?". Challenging Dr Vernon is not audacity or boorish. It's necessary, given the gaping holes in logic both in the material referenced on the CAA site, and her stunning and unbalanced silence on important issues. And it's important for your credibility.

    5) What you said:
    We can do better.:Retro smile:

    And just before posting, I re-logged on and saw that I'm way late as usual! Better late than never. It needed to be said. As Popeye said, I YAM what I YAM!
     
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Dear Parvo,

    You and I and Cort are of the Body Politic... or should be.

    Dr Vernon has not yet declared herself.

    I have your back, Parvo!

    Peace to you,
    Koan
     
  14. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Parvo, you make great points and they are quite timely. It just feels like you're posting late to you because threads like this one move so fast.

    Koan, see why we had to bring you back here! You are a balm that is so needed here. :Retro smile:
     
  15. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    And my dear Teej, of the body politic also!

    I am proud.

    peace out,
    Koan
     
  16. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    A cool definition of the Body Politic

    That makes a lot of sense Koan, thanks!

    What the Body Politic is:

    From: http://www.wisegeek.com/what-is-the-body-politic.htm
    The term the body politic is used to describe the people of a government considered as a whole, from the government's leader right down to ordinary citizens. Some people describe the government itself as the body politic, excluding the citizens, but more commonly, this term refers to the government and the people as a collective. The idea behind the concept is that healthy governments should focus like a healthy human body.


    This concept is quite ancient; the Greeks, for example, sometimes used the body as a metaphor to describe the state, as did people in India. However, the term the body politic is usually credited to author Thomas Hobbes, who mentioned it in his 1651 book Leviathan. Later authors ran with the idea, sometimes producing tortuously complex lines of thought to talk about the body politic.


    When considering any society, many people think that it is critical to look at the role of the people, considering the society as a whole. In some cases, a government only exists with the will of the people, and the opinions of the people have a profound impact on the nature of the government. In other instances, unrest among the people can lead to problems at the head, even if he or she does not rule by consent of the people. While the head of state may be at the head of the body politic, the head cannot function in a vacuum. It needs other parts of the body to survive, like a supportive cabinet, a legislature, and a willing populace.

    Opinion columnists often talk about the body politic when they want to stress the idea that a society must function as a whole. The body politic may also be criticized as a collective when things are not going well, under the logic that since all members of a society are responsible for the function of a society, everyone is culpable when a society is struggling. Philosophers, economists, and political theorists also like to explore the concept of the body politic, with new interpretations of this concept emerging on a regular basis in scholarly journals and books.

    The head cannot function in a vacuum
    I like that...:Retro smile:
     
  17. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    This old activist will be on the front-lines 'til the end.

    Whether you want me with you, or no, I will be there.

    Get used to me. I'm not going away until it's over.

    Peace to all my lovely friends and all my lovely foes...

    Koan
     
  18. Kati

    Kati Patient in training

    Messages:
    2,073
    Likes:
    1,618
    Koan that was a word of wisdom for your 2000th post! Congrats and glad to read you each and every times. :hug:
     
  19. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    OMG, that was my 2000th! I had no idea! But, I cannot say that I am sorry it was what it was or that I could have come up with anything better had I known.

    Thank you, Kati, for marking it for me!

    We are blazing a new trail in this strange virtual land. I very much appreciate your noticing where I am! May the heavens take note of you also!

    Peace out,
    Koan
     
  20. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    .....

    :hug:

    .....
     

See more popular forum discussions.

Share This Page