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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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Search results

  1. raven

    William Switzer - CDC looking for XMRV and MLV in lab workers!

    William M. Switzer, MPH (part Vulcan?) Discussed here http://forums.aboutmecfs.org/showthread.php?10325-CROI-(Retrovirology-and-Opportunistic-Infections-Boston)-on-XMRV-and-CFS/page17 Serologic and PCR testing of persons with chronic fatigue syndrome in the United States shows no...
  2. raven

    Comment by 'raven' in 'Loyalty to CAA, not McCleary'

    Well said Justin, I'm with you.
    • raven
    • Blog entry comment
  3. raven

    Caa poll

    I think that reporters can be told the CAA doesn't represent us without it coming off as negative. If you disagree with their advocacy why not say it, give your reasons, then give other names or organizations to speak with and tell them why they'd be better choices to represent us...
  4. raven

    Comment by 'raven' in 'Caa poll'

    If you don't support the CAA's "advocacy," here's another petition to let them know. They're aiming for 1000 signatures. http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-of-america-as-our-advocacy-representative#signatures
    • raven
    • Blog entry comment
  5. raven

    Comment by 'raven' in 'CAA: GET and CBT effective'

    McCleary, and others within the CAA, believe GET and CBT are beneficial. Part of the CDC's CFS section has educational courses for health professionals http://www.cdc.gov/cfs/education/wb3151/index.html A Primer for Allied Health Professionals, Course WB3151 Faculty and Credentials...
    • raven
    • Blog entry comment
  6. raven

    Caa poll

    Feb 2010 McCleary says, "For the past several months, with help from the federal relations firm with which we work closely, B&D Consulting, weve been identifying new sources of federal funds to supplement the fairly meager amounts being spent by NIH and the U.S. Centers for Disease Control &...
  7. raven

    Caa poll

    I don't know how much of the $859,859 came from donors but they may have a more detailed IRS report if they're asked to provide one via snail mail? From the 2009 IRS 990 form (percentage changes reflect 2008 data) Statement of revenue 2009 Breakdown - part VIII, pg. 9 Membership dues...
  8. raven

    Caa poll

    Does anyone know any of the current board members? http://www.cfids.org/about/board-of-directors.asp Maybe one or more of them would be open to listening to patient representatives and effecting change? Jennifer has stated on blogs she's taking patient concerns back to the board but nothing...
  9. raven

    Caa poll

    I feel the CAA is doing more harm than good and wouldn't mind seeing them vanish either. They've already moved into reporting the news rather than making it, (except for McCleary's recent comments on GET & CBT) let them do that so the information is on the website and Facebook.
  10. raven

    Caa poll

    Wow, not sick but pretty angry. McCleary currently serves on the AABBs interorganizational XMRV Task Force. http://www.aabb.org/Pages/Homepage.aspx I'm afraid she'll also "resist" XMRV research. "The CFIDS Association of America commends the AABB (formerly the American Association of Blood...
  11. raven

    Caa poll

    A friend and advocate for 20+ years got a message from a former board member who said they can't speak out openly against the CAA or Kim so some pretend to support them while actually supporting the work of the WPI and others.
  12. raven

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Cort, I set out looking for tangible results the CAA has accomplished based on what Jennifer stated in her post. Using your analogy, I looked at several trees in the forest CFSAC, GAO investigation, SSA ruling, CDMRP funding, new leadership at NIH and CDC and the 6 research grants. The state...
  13. raven

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Re: CFSAC, check out CFS Untied's blog, specifically the repost of Pat Fero's report on NIH inadequate funding for CFS grants http://cfsuntied.com/blog2/2010/10/16/study-inadequate-nih-funding-for-cfs/ Pat spent years compiling a report of NIH spending titled, "Inadequate National...
  14. raven

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Where did you get your figures from Cort, they don't reflect the 2009 data from the IRS 990 forms GuideStar and Charity Navigator use? (The CAA had an income of 1.9 million in 2008 btw) You neglected to mention that CAA ended 2009 with a 439,294 deficit, more than double that of the WPI...
  15. raven

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Charity Navigator has a section titled, "Charities Performing Similar Types of Work." The CAA's overall score and overall rating do not compare well to charities performing similar types of work. I've refreshed the page over 10 times to bring up different non-profit comparisons and not only...
  16. raven

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    The IRS 990 public data form on CAA's website lists Kim's salary as $177,517 in 2008 and 170,195 in 2009. How can you say her salary is overinflated when those figures are reported to the IRS? There was also a total of $604,842 that was distributed amongst various CAA affiliates last year...