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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Where does the CAA

Discussion in 'Action Alerts and Advocacy' started by bakercape, Sep 28, 2010.

  1. kdeneris

    kdeneris

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    Hi, Cort:

    I am really in favor of a one-two punch, (repeated as many times as necessary) or a "good cop -- bad cop" approach to our advocacy efforts.

    Although I have been sick for 7 years now, I didn't get diagnosed (by Dr. Bateman) until about six months ago. I've spent most of the time trying to get up to speed on the science, and there is a steep learning curve for people who are trying to understand the history and politics, as well. But I am a little suprised to not find established groups ACTing UP, big time. There certainly will never be a better time to do it.

    I suggested on another thread that we really could benefit from forming a legal defense fund for people with ME/CFS. Some people/organizations do need to cultivate relationships with the legislative branch, and to protect their access to it by not breaching any professional or bureaucratic standards of decorum. They have to speak softly, but the people on the legal defense fund team should carry a big stick to back up those politely worded requests. In addition, a legal defense fund can advocate for us with the media, in a different way, and be quite a bit more blunt in conveying its message. (I was afraid somebody would have to sue under FOIA to get the Alter paper released.)

    But an organization primarily engaged in defending the civil rights of ME/CFS patient in the courts, could potentially have a big impact on public policy by winning a single case. (And even losing cases can generate valuable publicity.) I am sure it's very expensive starting a legal defense fund, but I am equally sure we are going to need such an organization, especially those of us who will be considered contagious. (It is also true that under current Federal statutes, those who are not XMRV+ will still be protected by existing disability legislation, and so a legal defense fund will not find itself splitting apart along " - or + for any retrovirus" lines.

    Kim
  2. xrayspex

    xrayspex Senior Member

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    u.s.a.
    Cort, I think it would/will take me awhile to ferret out the history w/Susan and Reeves etc
    But as far as Reeves go, there is no doubt in my mind that he played fast and loose with the populations he used for his "studies" and he did funny things with the numbers, counting the no. of patients differently from the same study but then presenting them in different ways and total amounts and diagnoses etc for different papers and occasions, what I don't know is if and how Susan knew about that at the time and if she took any action to rectify it.

    Here are some letters to editor Journal Royal Society of Med including excellent one with L. Jason about why definition matters, ie this excerpt:

    "This study highlights one of the most prominent issues in the field of CFS - who actually has CFS and who does not and whether there are there subsets. Multiple definitions are currently used creating an umbrella term that covers a very heterogeneous population making extrapolation of results difficult between subgroups and definitions.
    This study highlights one of the most prominent issues in the field of CFS - who actually has CFS and who does not and whether there are there subsets. Multiple definitions are currently used creating an umbrella term that covers a very heterogeneous population making extrapolation of results difficult between subgroups and definitions.

    Unfortunately, the possible inclusion of people who do not have a disease with patients who do, has the potential to bias and confound study results regardless of the nature of the study or who the authors are."

    http://shortreports.rsmjournals.com/content/1/4/28.full/reply#rsmshorts_el_32
  3. Mark

    Mark Acting CEO

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    I'm afraid I have to disagree with this line that some people are taking. Demanding to know the details of large donations to charitable organisations is not a great way forward: in practice it's just a way to lose a huge proportion of your funding.

    Many years ago, before I was ill, I was a fundraiser for a local homeless advice and support group. One day, out of nowhere, our afternoon was brightened immeasurably when I picked up a phone call from the secretary of a famous UK actor and comedian. This well-loved figure wanted to make a one-off donation of (if I remember right) 10,000. It was a huge sum to us...but there were conditions. The secretary wanted firm assurance that (1) we would not use the donor's name in any publicity, (2) we would not attempt to contact him for more donations, (3) we keep the matter confidential and discreet. She also made it clear that regrettably he was not able to appear at fundraisers etc for us: his diary was full for several years in advance, and he was very shy in these matters, he did not want to push himself forward or appear to be a "do-gooder": all of his charitable donations worked this way, and he used all his TV money in this way, and he did not want that fact to be common knowledge.

    I had to enforce that policy several times actually, and insist that nobody break this agreement: people kept wanting to every time we were strapped for cash, of course!

    I really don't think that major individual donors do dictate the policy of charitable organisations. It's up to the board not to be compromised in that way, and their policy and practice is always pretty transparent, by law - the legal requirements and their stated charitable objectives are the major constraint on their activities. I think those organisations should (and do?) break down their finances by category, so you can see the sources of funding in general. But "outing" everybody who donates to charity is not a practical plan...and I'd especially caution: which other charities have to contend with activist pressure on issues like this? Do people asking for this have any evidence that this sort of demand is normal? I've never come across it before anywhere else, myself. This sort of thing just undermines us all, IMO.

    Political parties are different, of course. Relatively recently, there has been much greater openness about this information and rightly so. Political parties should declare their funding, everyone needs to know who's behind them. But not charities. Those making that argument should note that they are either implicitly making a point about all charities here, in which case maybe they need to campaign for a change in the laws governing charities, or they are holding the CAA to different standards than any other charity.

    I'm afraid I have to say, I really think this sort of campaigning is purely counter-productive. Turn to the most culpable targets first, those responsible, those with the power to change things, those who make outrageous comments: the big targets, the hard ones to crack, the people who really can make a difference. Direct your energies and anger there, where it belongs - not at people who in your view are fighting the fight in the wrong way. Fighting amongst patient organisations does nothing but undermine us all: I can just picture the Wessely's of this world laughing their asses off about it all.

    Honestly, I'm feeling pretty desperate as I write this: I want to beg and plead with people to stop with this sort of stuff, really I do. How can I get this across? I could tell you some stories...but they'd get me into trouble...but I can promise you this: if there is a conspiracy and if there are spies and infiltrators amongst the ME/CFS community, then guaranteed their main strategy is to impersonate angry radicals and misdirect them, point them at exactly the wrong targets, and turn them against their own. Divide and rule: old as the hills and I've seen it before myself. I'm somewhat agnostic on conspiracy theory as I've explained before, but if there is anything in it, then the infiltrators will most certainly be found at the heart of those groups that sometimes seem to be mostly dedicated to attacking their own side. Please, please, please: think on!...
  4. charityfundraiser

    charityfundraiser Senior Member

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    Hi bakercape,

    First, here are the totals. I believe the line I have bolded is the individual donations category.

    2009 Form 990:
    http://cfids.org/about/2009-990.pdf

    Membership dues: $62,172
    Government grants: $228,380
    All other contributions: $859,859

    Total: $1,150,411

    The 9 top contributors are publicly available at Guidestar. You need to register for free to view the document for the names.
    See Forms 990 Provided by the Nonprofit, Part 2. (page 6 of the PDF file)
    http://www2.guidestar.org/organizations/56-1683450/cfids-association.aspx

    It looks like of the 9 top "contributors", 1 is a government grant, 7 look like individuals or their estates/funds, and 1 looks like another non-profit organization under the category of "payroll".
    The first "contributor" is the $228,380 government grant from above from the CDC.
    The top 7 individual donations total $384,236 and range from $100,000 to $30,000 each.
    And from Health Charities of America, $35,629.

    So, a government grant from the CDC accounts for 20% of total contributions and grants.
    The top 7 individuals account for 33% of total contributions and grants (or 45% of individual donations).
    "Membership dues" account for 5.4%.
    Another non-profit accounts for 3.1%.

    For further deduction of who some other top individual donors are, you could look at the top donors on the FaceBook Cause.
    http://www.causes.com/causes/233461?m=0d43bb06

    The amounts some people donate via Causes are just token amounts for both economic (transaction fee) and privacy reasons. Personally, I will donate about 10 time as much per year via check to CFIDS Association and other CFS research organizations as I did via Causes. So $10,000-$15,000 from me total, majority to CFIDS Association.

    I also recall it was stated that Kim McCleary is one of the very top donors.
    http://cfids.org/cfidslink/2010/010607.asp#7s

    Also, according to the table of contents for at least the 2000-2003 Annual Reports, the donors are listed but those pages are not available in the online version.
    http://cfids.org/about/annual-reports.asp

    However, via some Google sleuthing, it appears that the 2001 donor list is still available in an unlisted PDF.
    http://www.cfids.org/about/2001-ar-print.pdf
  5. Roy S

    Roy S former DC ME/CFS lobbyist

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    Those are good and accurate points, except it's not by default. It was by plan by a group of us nearly 20 years ago. It was a good plan that worked out very badly, except for Kim McCleary.
  6. bakercape

    bakercape Senior Member

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    Cape Cod. Mass
    I look at it all

    thanks. I'm having a bad relapse and in bed most of the day. But when I have the energy will look.:Retro smile:
  7. Cort

    Cort Phoenix Rising Founder

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    Facts! I love it - thanks!
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Know who these donors are?

    Justin, I have been informed that Guidestar's term of use does not allow copying donor information and posting on other sites - so we are removing this post. I recognize that you didn't know that.

    http://www2.guidestar.org/rxg/terms-of-use.aspx
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for the heads up.
  10. Cort

    Cort Phoenix Rising Founder

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    I'm not surprised about Iverson. While he left over the direction of the organization he was quite clear that he still felt it should be supported and he obviously finds things he can support (some big things). That is where I am about the CAA; even if there are some things I'd like to do better or differently there are other things they are doing that I think are vital to the CFS community (which I've listed many times in the past :)).

    I don't see them in a black or white manner - either all for or all against - the same is true for the WPI; each has their own problems AND each contributes in a significant way to the fight for CFS IMO.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Perhaps this is a personal matter between Mr. Iverson and Ms. McCleary, but the fact that he made explicit when he resigned many of the same criticisms that have been made by us on PR and elsewhere, and he still gives so much money and CAA still basically ignores what he wants (assuming his positions have not changed significantly) makes me think even less of CAA. Iverson is one of the biggest heros in ME.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Perhaps this is a personal matter between Mr. Iverson and Ms. McCleary, but the fact that he made explicit when he resigned many of the same criticisms that have been made by us on PR and elsewhere, and he still gives so much money and CAA still basically ignores what he wants (assuming his positions have not changed significantly) makes me think even less of CAA.

    Iverson is one of the biggest heros in ME and if you have read Osler's Web you know how much he has gone thru and how much he has done for us. He got an MBA from Wharton and was a very successful young banker. He was struck down with a bad case of ME and got no diagnosis except for a misdiagnosis of depression. Mayo clinic gave him a huge bill and told him nothing was wrong with him except that he was depressed. He went through many years of hell before he even heard of "CFS"- on the local news and he said "that's what I have." He founded and funded CAA and wanted aggressive activism and CAA to be called MEAA, etc., but Kim Kenney wouldn't allow it and according to at least one observer, she gained influence over the board to the point of control and forced Iverson and other directors out.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort, I'd appreciate it if you'd PM me when you delete content of mine since I don't normally check on my posts to see if they've been deleted.

    Also, can you put back up the intro comment i wrote?

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