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. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Hi all,

    I've received various questions about whether the Association staff actually reads emails sent to the office from several people on the forums, including teejkay most recently. Yes! is the simple answer.

    The Association receives thousands of emails every day and the staff makes its best effort to direct messages to the person/people most capable of assessing and addressing issues that are raised. The volume of email, regular mail, and comments posted to Facebook profiles and discussion forums like this one (also read by staff members) make it impossible to respond to each one personally, but the input and feedback from supporters and others in the community are very important to staff and Board alike and we strive to be both aware and responsive.

    Most recently, the Association added a FAQ page which is regularly updated on the website. The Spark! website was changed to remove some materials that some believed objectionable. Understand that the staff is very small and carrying a heavy workload, so not every email or request will be responded to personally. Both the Board and staff are reading and considering input from many sources.
  2. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    This is great news Jennie. We sure appreciate your involvement here. Thank you! :sofa:
  3. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Thank you, teejkay, for asking the question. Allow me to clarify that this is not really "news" in the sense that the Association is changing how it reviews or considers input. I just wanted to respond to your (and others') question about whether we read email at all.
  4. Samuel

    Samuel Bedbound with NO DOCTOR

    Messages:
    221
    Likes:
    2
    Hi jspotila,

    Still much more to do, even on the same page. Please see the CAA pamphlet thread.

    Samuel
  5. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Thank you, samuel, I have been reading that thread.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    437
    Likes:
    432
    Illinois, USA
    Is the CAA working with the WPI?
  7. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Roy S, in what context?
  8. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Good point, Samuel. Thanks for reminding everyone of this. :Retro smile:
  9. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    We're lucky to have Jennie here. She's on the board at the CAA and she's listening intently to all of our suggestions and doing her best to pass them on to the CAA.

    Thank you Jennie. :Retro smile:

    tee
  10. Robin

    Robin Guest

    Yes, we heart Jspot! Her posts are always appreciated!
  11. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Hi jenny,

    What a great title for the thread. I really hope you are listening. We need the CAA to represent us well.

    Unfortunately, I writing because I'm outraged and appalled at the article on pacing that you recommend to members in the March newletters. This reflects so poorly on the CAA.

    Please take a look at the CAA recommends, to me, questionable article on pacing. March 2010 for more information on what is so dangerously wrong with this article and the reactions of some of the forum members.

    My wording was too kind – it is not questionable – it is dangerous unscientific nonsense that is selling the belief that all people recover from ME/CFS, and that pacing and attitude are the key tools to reaching recovery. They also recommend the lightening process, NLP................ and deny a biomedical cause or treatment.

    What on earth is the CAA doing?

    I really think you need to send out a retraction to all members, saying that an error was made, the CAA does NOT associate itself with the ideas in the article, and to withdraw the article from your library and sites.

    If the CAA does agree with the ideas in this article, then members need to know that this is the position regarding ME/CFS that the CAA holds.

    I don’t know what to say – I am disheartened, upset, and frankly disgusted that the CAA would associate itself with the ideas in this article, let alone recommend and link to it.

    islandfinn
  12. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    That is a typical "fudge" answer. It is not an answer at all. It should not be difficult to say: Yes, we are, in thus and such a way. OR No, we aren't and this is why...

    So, again, is CAA working with WPI in any context?
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    :cool:

    Nice point. You might also give the same question to the WPI; is the WPI working with the CAA?

    My guess is that nobody doing much of anything with each other.
  14. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    I hope I addressed your concerns in my response on the other thread.
  15. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    I agree with your sentiments islandfinn, and you have saiid it well.

    Maybe this goes back to the problems of definition. Some of this stuff, one can understand, might work very well for people with predominantly psychological factors. Personally, I am relatively high functioning (althoughh only at 10% of pre-ME levels), but in spite of this, my main pitfall is doiing too much - no doubt due to my lack of self esteem ;). So, even for non-severe cases, GET, or increasing activity do not work.

    Maybe well-intentioned, but the whole thing demonstrates a fundamental lack of understanding. I think where they're going wrong is in observing that some people recover from ME, and in doing so they gradually increase their activity. This ignores the fact that this group of people may have a different disease, and I believe this is likely. My personal view is that there's a subset of CFS/ME where recovery rates are 0%. There's another subset where recovery occurs, often through the likes of GET, Lightning Process etc. and that's a different disease, with a different cause.

    We'll see.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Are any ME/CFIDS cases caused by 'predominantly psychological factors'?

    I haven't seen any evidence that anyone's ME/CFIDS is caused by 'predominantly psychological factors.' When I say ME/CFIDS, I of course mean the unique disease with the characteristic unique presentation, ie Canadian definition ME/CFS. Obviously, the Oxford and Reeves definitions are so harmful because they muddy the science, diagnosis, scientific and popular literature and public and medical conceptions of the disease and sufferers. The only studies I have seen that suggest 'predominantly psychological factors' in the causation of any individuals' "CFS" are those studies that use the Oxford and Reeves definitions. Any study using these laughable definitions are prima facie invalid (invalid on their face). Period. This is why all of us and our patient organizations must make it very clear that these definitions are completely invalid and any study using them are invalid. end of story. This is why Dr. Vernon's comment that Oxford definition is 'accepted' is totally unacceptable.
    Do you know of good evidence that ME/CFIDS can be caused by 'predominantly psychological factors.' I don't mean to attack you, just to root out if there is really any evidence.
  17. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    in a nutshell, an unequivicle(sp) no.
  18. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    katieann, what facts are you basing this statement on?
  19. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    [​IMG] Originally Posted by Roy S [​IMG]
    Is the CAA working with the WPI?



    in a nutshell, an unequivicle(sp) no. "

    Twice you've been asked whether CAA is working with WPI and twice you've responded with a question instead of an answer.

    It has been said here that WPI has submitted proposals for studies, to CAA, and has been denied. Perhaps this is what katieann meant when she said "an unequivocal no"?
  20. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    I am not trying to be obtuse or difficult. There are many ways of working together besides funding research. To that point, here is what the Association FAQs say about the funding issue:

    Both the Association and WPI share common goals - solving CFS - although we pursue that goal in different ways. But the Association cooperates with WPI in a number of ways:
    - Dr. Vernon (CAA) and Dr. Mikovits (WPI) serve together on the XMRV task force
    - The Association nominated Dr. Mikovits and Dr. Peterson to the CFSAC, as well as Dr. Donnica Moore (who recently became a spokesperson for WPI)
    - Leadership at CAA and WPI communicate with each other on a variety of issues/topics

See more popular forum discussions.

Share This Page