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The CAA: Defense for the Sake of Defense

Discussion in 'Action Alerts and Advocacy' started by mojoey, Oct 10, 2010.

  1. mojoey

    mojoey Senior Member

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    I copy and pasted the following exchange from the publicly viewable CAA facebook wall to shed some light on the public response to CAA telling patients it plans to use its "inside voices" as opposed to the ACT-UP tactics that many patients are now espousing and calling for. Questions about exactly what the CAA plans to do in the way of XMRV research have gone unanswered. The exchange led to some investigation, which then led to some interesting findings about the CAA's financial activity.

    Joseph Chang
    Joseph Chang
    Jennifer Spotila
    Joseph Chang
  2. mojoey

    mojoey Senior Member

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    Joseph Chang
    Wilhelmina Jenkins
    Ashley Hinds
    Joseph Chang
    Joseph Chang
    Wilhelmina Jenkins
    Joseph Chang
    Wilhelmina Jenkins
    Joseph Chang
    Joseph Chang
  3. jspotila

    jspotila Senior Member

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    I am more than happy to address any questions you have about the Association.
  4. bakercape

    bakercape Senior Member

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    Can

    we start a new ME/CFS org and put Joseph Chang in charge?

    Most of what the CFIDS assocition does benefits the Cfids Association. Yes they they have funded a few good research projects with our money. But it seems like the employees of the CFIDS association are living way too well off of the suffering of a disabled and desperate population donations. Something just seems wrong about a CEO with there Bachelors Degree pushing close to over 200, 000 a year in salary and benefits while we lie in bed with no ssdi for years and in some cases no health insurance.

    I would advise anyone who wants to be well someday to give there money to the WPI as the returns on your investment will be much higher and the money will be more efficiently spent on research for all of us.
  5. jspotila

    jspotila Senior Member

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    http://cfids.org/cfidslink/2010/010607....asp#2s

  6. mojoey

    mojoey Senior Member

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    Here is one question from above that I haven't seen an answer to:

  7. mojoey

    mojoey Senior Member

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    More on compensation versus research expenses:

    Jennifer Spotila
    Looklikeheaven Feellikehell
    Corvid Corax
    Corvid Corax
    Joseph Chang
    Joseph Chang
  8. bakercape

    bakercape Senior Member

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    breakdown of some spending 990

    Jennifer, on your 990 form from 2009 it says the total expense for occupancy is $63, 810. Is this not high amount for a modest office space? I know some places where you could buy a house for that amount.

    Other items that strike me as a lot for a lean nonprofit to spend on functional expenses. Column A--
    Line 11 d) Lobbying 122,290 Who is paid to Lobby? Is Kim or one or more employees of the CAA paid this as an outside lobbyist?
    Line 14 functional technologies $ 63, 976
    LIne 17 Travel $47,620. That seems like a lot for 8 employees? Who needs to travel besides Suzanne Vernon and Kim?
    Line 24 a)Printing and Postage $47,325
    b) miscellaneous $20,858

    I found all this on Guidestar LIne A of the 990 for 2009. Correct me if I copied anything wrong. I do have CFS and make errors but believe it is correct
  9. Cloud

    Cloud Guest

    Hi Jennifer...actually I do have a question. It's off the financial focus, but I feel equally important. On the CAA website, there is a "Do I have CFS" self survey. http://www.cfids.org/about-cfids/do-i-have-cfids.asp Well, according to that survey, it's very unlikely that I have CFS and, I believe that would be true for a majority of the PWC's who would take that survey. So, why would the CAA be using this criteria?

    I am not in need of assistance diagnosing my ME/CFS....that's already been done by the best. I'm just concerned about newbies getting misleading information from our largest national advocacy group. My disease progressed in large part because of a lack of accurate diagnostic information....I would really like to see others avoid that if at all possible.

    Thanks
  10. jspotila

    jspotila Senior Member

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    The difference is a result of the different accounting definitions of categories. In the annual report, consistent with non-profit accounting principles, salaries are allocated to the programs proportionate to staff time spent on those projects. For example, a staff member who works on research 50% of the time would have 50% of his/her salary allocated to the research program as opposed to "management." The IRS 990 form has different requirements.

    The Board requires an external audit by an independent accounting firm every year, and the IRS 990 is also reviewed by external accountants. There are no accounting irregularities at the Association, and we have top ratings from several charity watchdog groups: http://cfids.org/cfidslink/2010/010607.asp#9s
  11. jspotila

    jspotila Senior Member

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    Regarding office space, the Association has been in the same location since 1992. Rent is at or below average market rate for Charlotte, North Carolina.

    Regarding lobbying, the Association has retained external government relations expertise since the 1990s. We are currently working with B&D Consulting: http://cfids.org/cfidslink/2009/070109.asp

    Functional technologies, travel, printing & postage, etc are all at levels on par or below other organizations our size. The Board has established controls so that expenditure levels remain proportionate to resources. Believe me, there are no fancy trips to exotic locations. Quite the opposite, actually.
  12. jspotila

    jspotila Senior Member

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    Hi Cloud - The survey was written some years ago based on the Fukuda criteria and additional symptoms reported by many patients. I definitely understand your concerns about it. It's on the list of features/changes that need to be addressed in a comprehensive website update.
  13. bakercape

    bakercape Senior Member

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    Thanks for the reply

    I thought you guys ended your work with Sheridan years ago because it was not effective. Did the over 100,000 for 2009 all go to B&D for Lobbying? When did you hire B&D?

    That still seems like a lot for travel to me. Do you guys stay at the super 8's use AAA discounts. Get double rooms. Does anyone travel besides Kim and Suzanne and if so why?
  14. Sing

    Sing Senior Member

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    The Need for the Canadian Consensus Definition

    Pulling back from the theme of the money for a moment, I wish to say that I feel that the greatest need of the patient community is good scientific research. The foundation of this is the most accurate case definition possible at this time to select the patients to be studied. The Canadian Consensus Definition is that, derived from months of work by topnotch international group of clinicians and researchers who represented the most knowledgable group of physicians we have had. The other definitions have been too vague and in some ways, erroneous.

    Further, to define CFS as a diagnosis of exclusion only is absurd. This rules out most of its defining features which have labels which might be looked at in isolation. Orthostatic Intolerance, for example, is one type of Autonomic Dysfunction which is characteristic of ME/CFS according to the clinicians who gave us the 2003 CCD. There are a number of other examples of characteristic symptoms which might be given stand-alone labels. Without such characteristic symptoms, there would be no ME/CFS!

    If, as the idea implies, ME/CFS has no characteristics whatsoever which might be given diagnostic labels of its own, what kind of illness would this be? This was the set up for the "nothing" diagnosis of CFS, the meaningless waste-basket diagnosis it has been--particularly, the "all in your head" problem it has been viewed as.

    I am confidant that you, Jennie, know better and so does the CAA. I respect both you and the CAA for the many constructive things you have been doing for the patient community. But what I feel would be very helpful is for the CAA (and the CDC and everyone else!) to uncouple itself from the vague, incomplete and partially erroneous definitions which we have been, in effect, betrayed by over the years, in terms of failed and useless research, in favor of the Canadian Consensus Definition.

    This definition has teeth and grip and has been giving researchers success and advancing the knowledge of this illness whenever it has been employed. In my view there is no good reason why this should not be the set of diagnostic criteria for research projects as well as patient identification until such time as scientific research can improve upon it.

    Thank you,

    Sing
  15. illsince1977

    illsince1977 A shadow of my former self

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    You have a budget of that size devoted mostly to education and you have something years out of date on your website? Doesn't anyone there understand modern Internet technology and the place it has in today's public image and potential for educating the public?

    All I can say is shame on you! Shame, shame, shame! You should be ashamed of calling yourselves advocates for us. If I had never read anything else about the CAA this would be enough to convince me that you are ineffectual at the least, and certainly not worthy of what little money we patients have.

    You sound like a terrible investment. If you do such a fantastic job, why was I sick for 24 years before I'd even heard of CFS? Yes, my moniker is accurate. I've been sick since 1977. I went to some very good hospitals, but no doctor EVER mentioned CFS. That doesn't say much for your education efforts.
  16. jspotila

    jspotila Senior Member

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    We ended our engagement with the Sheridan group in 2009 after completing a bidding process among several firms. The B&D contract begain in mid-2009. The amount paid for the consulting services has remained pretty stable for the last few years, by my recollection. The strategic experience brought by B&D helped the Association get CFS listed as an eligible condition in the Congressionally Directed Medical Research Program at DoD this year.

    We use every other possible economy for travel. Our Major Gifts Officer does limited travel, and the Board travels for in-person meetings only when resources permit. Everything is low budget, as I've said.
  17. jspotila

    jspotila Senior Member

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    I agree, Sing, and so does the Association: http://cfids.org/cfidslink/2010/010607.asp#4r

    The Canadian definition is not widespread enough, yet, and thousands of articles use Fukuda. But in the last year, I think we are starting to see more of a trend towards Candadian. For enrollment in the SolveCFS BioBank, patients must be diagnosed with CFS under Canadian or Fukuda, BUT we require post-exertional malaise as a symptom (Fukuda does not).
  18. jspotila

    jspotila Senior Member

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    I'm sorry to hear that you have been ill for so long. I've been sick 16 years, and I have a hard time imagining what it would be like to endure this for 33 years.

    I'm not certain which budget for education you are referring to, but the public awareness and provider education campaigns were funded in large part through the CDC contracts. Our organization website was never part of that contract. The Association is very aware of the importance of Internet technology and how important the website is - including the expense and complexity of information architecture and website design. Given the choice of spending bucks on research versus bucks on the website, it's a tough call every day for the staff. Research is the priority, but on the other hand there is only so much that can be done to the website on a shoestring. I am personally working on finding options that won't require market-value services - we would be looking at 5-figure costs at market-value.
  19. Cort

    Cort Phoenix Rising Founder

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    You can say the CAA does not use ACT Up type advocacy and maybe they should (I think somebody should :)) but to call the CAA inflexible is totally true either. Some people did not like the media campaign but I thought a several million dollar media campaign paid for by a federal agency focused on getting the word out that CFS is a serious and legitimate was, all in all, a very good and innovative thing the CAA did by working behind the scenes.

    The CAA's decision to pair up with several other disease organizations to promote more funding of fatiguing and painful mostly women's disorders is another example of the CAA working kind of inside the scenes to promote changes.

    Their ability to get CFS into the pot of money dedicated to congresionally mandated military medical research is another.

    Getting top retroviral researchers into the federal advisory panel for CFS is another.

    Keeping CFSAC alive when it was threatened a few years ago was another.

    (I would note that the WPI is doing the same kind of behind the scenes advocacy that the CFIDS Association is doing - which makes it hard to understand how they got into that statement. )

    Yes, the CAA is not an ACT up like organization - I think that's too bad - but there's nothing to stop you or me or anyone else from creating an organization and doing that. The fact that there's only one or two or three organizations in the US that have any interest in federal policy in CFS is a tragedy and has nothing to do with the CAA. The CAA was started by a CFS patient. I suggest that if we want another kind of advocacy group that another CFS patient or two or three or five start one up.

    The point for me is that we need both kinds of advocacy. If the CAA is going to use one kind - fine, I'm glad they're doing it - we need all the help we can get. If they're not going to do the more inflammatory, in your face kind of stuff, well, let's pull up our sleeves and get to work.
  20. Cort

    Cort Phoenix Rising Founder

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    I do think Joesph brought up some interesting question regarding finances that are, honestly, beyond me and should be addressed but some of his conclusions on other subjects, I disagree with.

    It may be clear to you that the CAA sees the WPI as a threat but I fail to see how the discovery of retrovirus is a threat to anyone anywhere who is concerned with or has CFS. The discovery of a retrovirus will only send scads of money cascading towards this disease - lifting all boats including the CAA's - which it already has. The CAA recently nominated several retrovirologists including one of the top pathogen hunters in the world (Ian Lipkin) to the federal advisory committee. Basically they've tried to pack the science side of the CFSAC with retrovirologists and yet you are claiming they see WPI (and hence XMRV) as a a threat!

    That's not how I would deal with a threat. If I was threatened by XMRV I would be sure to make sure that federal officials were not talking to retrovirologists. Nor would I initiate a study with a top drug company to look for XMRV...............

    Blaming the CAA for not doing XMRV research when their research studies were initiated before XMRV hit the scenes is ludicrous. You can't wind the clock back and here's the result you were looking for: the CAA actually IS starting off their BioBank studies by doing XMRV research with Glaxo Smith Kline.

    Asking a little support group that was last able to fund a slate of studies in what, 2008 to do a thorough investigation of retrovirology pathology doesn't make sense. (Are you thinking about what you are saying?) So far 14 results of XMRV studies have been announced from research institutions in Europe, the UK, the US and Canada - costing God knows how many tens of millions of dollars - (with many more on the way) and still the research community is in a 'zone of chaos'. I don't think the CAA with its little budget is going to figure this one out. CAA is partnering with GSK to study XMRV in CFS. That's enough for me.

    If you're worried about what they're going to do in the future then you'll have to wait for the future when the CAA announces its next series of grants. I don't think that's going to be anytime soon. Meanwhile you might to celebrate the fact that their pre-XMRV studies were about as good as they can get. Check out their latest webinar and then see if you think that is not 'real research'. If you follow CFS research at all then you know that there actually is very little 'real' research done that attempts to address the physical causes of CFS. I think we should support all of it.

    XMRV is going to be figured out but if you think the CAA has the funds to do that you're smoking something a little too strong. The CAA tried to do that with Dr. DeFreitas virus and we know that turned out....they were the only ones to fund her and because of that she never had the resources she needed. Now, thank God, federal officials are devoting resources to this and we should figure out the answer.

    It doesn't make sense for anyone, including the CAA, to hope for the answer to be other than Yes - XMRV causes some people to have CFS.

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