The CAA: Defense for the Sake of Defense

mojoey

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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
I've heard the CAA repeated state that it does not use ACT-UP tactics and that its M.O. is using its "inside voice", which I liken more literally to its "library voice." At the same time, it states that its mission is "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."

Nowhere in your mission does it state a need to remain inflexible and insistent on a particular approach to advocacy. The CAA reminds me of monolithic companies that are have attained a monopoly in their area (the CAA has clearly been the face of CFS in the political arena for the last 20+ years), and gets so complacent in its ways that once a legitimate competitor arrives (WPI) instead of adapting to a changing environment it hunkers down further into its stance to resist the tides of change.
Yesterday at 11:00am Comment Like Flag
4 people like this.
Joseph Chang
The truly successful organizations are always the adaptive ones, and in no time has this been more true than now, in a globalized hyper-informed world. You can choose to continue hunkering down and defending yourself with "but this is not our style" or you can choose to adapt to the changing needs of your target audience. You keep insisting that you're doing real research that excludes XMRV or retroviral pathology, but it's become transparently clear to some of us patients that this is a sign that you see WPI as a threat, not a partner.

Please realize that by partnering with WPI not just in word but by action, you will not lose your brand or market share, but you will extend it because you offer a plethora of resources and expertise that WPI does not. The giants always fall in a free-market society: that's evolution, but if XMRV becomes established with a pathological role in our illness, you will either be remembered for supporting the patient cause by doing what you can to aid XMRV research, or you will be remembered for foolishly carving out an obsolete style and identity. Ignore at your own peril.
Yesterday at 11:00am Like 4 people
Jennifer Spotila
The Association is not ignoring XMRV. Quite the contrary. In addition to all of the information we provide to the community, we are involved in XMRV research in a variety of ways. We do have a particular approach to advocacy, but it is not because of complacency, or fear of a competitor. WPI has a different mission, different strategy, and approach. This is a good thing! We all need to work together, bringing our unique expertise and approach to the table.
Yesterday at 12:37pm Like
Joseph Chang
These vagaries are exactly what I pointed out. You are denying your complacency by saying you have a different approach. The WPI is focused on defending the results of its published retroviral study while you're focused on defending your style. Do you not see the problem here?

You are saying you're involved in XMRV research but I have yet to see any specific information on funding nor intent to fund specific researchers or collaborate studies.

I repeat: results speak louder than words. When we see specific plans to fund XMRV there will no need for all this posturing. Your constituency is aghast. I don't mean this in an offensive way whatsoever, but realistically if you were a publicly listed company and we were your shareholders, we would've demanded a different approach that is based on results-oriented advocacy and thorough investigation of retroviral pathology. Don't you understand? The board of directors is supposed to act on behalf of the organization's full assembly (us patients), not decide in lieu of us what the right approach is. .
Yesterday at 2:53pm Like 5 people
 

mojoey

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Joseph Chang
Does CAA find it problematic that the most vocal advocates of the Association on this wall are either board members or relatives of the executive board? If you were really doing what's in the best interests of your constituency (patients such as myself that have donated to your organization) don't you think the public opinion of your efforts would be far more balanced?

If I were running CAA and I realized that my staunchest defenders were insiders or persons closely associated with insiders, I would probably take a hard look in the mirror and ask everyone else in management to do the same, and ask the simple question "Are we going in the right direction?" Then I'd survey the constituency with a small slice of the millions that are donated to CAA (aka market research) and find out how to keep this ship from sinking.
19 hours ago Comment Like Flag
4 people like this.
Wilhelmina Jenkins
Joseph, I'm getting the impression that you think the CFIDS Association is a lot bigger than it is. It raised $1 million in a special campaign to fund research - earmarked funds. It doesn't have money lying around for market research. The budget has never been large enough for all the work that needs doing. That's one reason that we are all very hopeful that some of this energy can be spent in developing other methods of advocacy. If there were not support for the CFIDS Association, it would have disappeared long ago, just like all of the other groups that began in the 80's and 90's. (And yes, I do post frequently, but that's what I do when I support things, and not just this organization. The board members are the ones who speak for the organization. I speak from very lengthy experience with the illness and the organization.)
15 hours ago Like
Ashley Hinds
I'd think you could get some market research done easily if you cut some out of the hideously overpriced salary of the CEO
6 hours ago Like 3 people
Joseph Chang
Wilhelmina--Although CAA raised 1 million for research by August 2008, it spent only 1/3 of that on actual research in all of 2008. Moreover, the CAA has bravely voiced its goal to raise $5 million by the end of the year, yet no specific plans to allocate any of that to XMRV have been uttered.

I invite you to take a cursory look at the 2008 Annual report to see what the problem is:

Education and Awareness $ 890,608
Research 350,186
Public Policy 235,845
Fundraising and Development 213,084
Management and General 136,675
Total $1,826,398

I personally don't too big of a problem with the management and general expense, seeing as it's only 7% of funds. Many successful for-profit companies and non-profits blow this number out of the water. I have a much bigger problem with research taking up 19% of the pie while education and awareness + public policy taking up a whopping 62%. If you are

I repeat CAA's stated mission:
For CFS to be widely understood, diagnosable, curable and preventable.

I repeat its stated strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.

The way I read that, you are a research organization, because through public private and commercial RESEARCH investment, you can cause CFS to be widely understood (because the public understands a disease with a pathological cause and will never understand a disease with a random pattern of dysfunction), diagnosable (pathological testing or other biomarker), and curable and preventable (especially if a pathological cause is found, and also through immune modulators a la ampligen if the immune dysfunction profile identified by WPI is confirmed). Yet research barely takes up 1/5 of your budget.

Skim off some of those education and awareness + public policy funds to do market research, because if that is the bread and butter of your strategy to achieve validation of CFS, it will never happen. Research and science is the only possible wrecking ball through the walls of complacency and ignorance; everything else is just part of the momentum. The sooner you understand that, the sooner you'll regain (or gain for the once) the support of CFS patients like myself and many whom have rallied around this public opinion of the Association.
5 hours ago Like 1 person
Joseph Chang
Of course, my indifference toward the management expense only stands if those numbers are actually accurate. It has been reported that Kim McCleary made a salary of $170,000 in 2008, which would exceed the entire management & general expense of $136,675 listed within the budget.

Now this would be an appropriate time for the board members to step forward and tell us how much is actually appropriated to executive compensation.
5 hours ago Like 1 person
Wilhelmina Jenkins
Joseph, all of that money was dispersed to the researchers, mostly in 2009. No earmarked money goes for anything but research. You have to look at more than one year at a time. And there are many of us who, for the past 20 years, have depended on the CFIDS Association for education about this illness. The Board makes the difficult decisions about which activities to pursue and, because when I was on the board I participated in these discussions, usually from my bed, I can tell you that a lot of effort and discussion goes into making those decisions.

They do not make research decisions until they have the money in hand. To do anything else would be unfair to the researchers.
4 hours ago Like
Joseph Chang
Yes I understand that earmarked money is only supposed to go to research.

In 2007 the revenue stated on the Assocation's 990 form was $3,359,714. $1.8 million of this was in government grants. In 2007 the CAA spent a mere 7% of funds, or at most $235k, on research.

In 2008, as I mentioned before, it spent $350k on research.

In 2009, it accumulated $1,161,591 in revenues. If we extrapolate the same allocation of 19% from 2008 to 2009, then an estimated $220k was spent on research.

This means in the three years from 2007-2009 you spent a total of $770k on research, far under the $1 million in research that was raised in 2008 alone. You can talk about "earmarking" for future projects all you want, but once again, where are the results?? Anyone with minimal knowledge of financial accounting just has to take a cursory glance at your tax forms and budgeting to see a clear discrepancy between your stated goals and your actions.

Lastly, as a point of comparison, during the three years from 2007-2009, you spent $2,486,188, $890,608, and (extrapolating from 2008 allocation) $569,180=a total of $3,945,976 on "education and awareness." From 2007-2009 You spent approximately 5 times the amount you spent on research. Ironically, if you'd spent that money on researching the pathology of ME/CFS those results would've largely done the "educating and awareness" campaign for you.

Actions speak louder than words, and numbers don't lie.
3 hours ago Like
Wilhelmina Jenkins
Joseph, you can't extrapolate. Money was raised, grants were awarded, and money was dispersed, mostly in 2009 since the grants were awarded in Fall of 2008. The money in earlier years was spent on education because that was what the grant was for - no options to spend it on something else. Research money goes to research; money from a grant for education goes to education. Extrapolation doesn't apply.
about an hour ago Like
Joseph Chang
Actually Wilhelmina, you're right. The amount awarded for grants was listed in the 2009 tax forms: $389,381. And like you said, there are multiple types of grants, so this number probably doesn't compass only research grants. Until CAA's 2009 annual report comes out (and considering how far into 2010 we are, it's rather unprofessional that it isn't out yet), we won't know how much was actually spent on research.

Just for kicks, let's assume that in 2009 CAA spent that entire amount of $389.381 on grants. That would still make it roughly $1 million that it spent on research in the THREE-year period from 2007-2009. That's STILL only a quarter of the amount the CAA spent on education & awareness, and public policy ($3.9 million) in the TWO-year period from 2007-2008!

Going through your tax statements, I found a much more alarming discrepancy. Why is it that in the annual report, the management and general expense is listed as $135,042 in 2007 and $135,675 in 2008 while in the respective tax forms, the salaries and benefits expense is listed as $924,226 in 2007 and $655,042 in 2008? This means that the salaries and benefits expense in this 2-year period is nearly SIX times greater in the tax forms versus the financial statements reported in the annual report.

Will the CFO please explain the discrepancy?
23 minutes ago Like
Joseph Chang
More telling numbers:

From 2007-2009, the salary and benefits expense totaled $2,553,029.

In the same period, the grants expense totaled $582,314.

Over the three year period, the amount of salary and benefits paid to company personnel exceeded the grants awarded by over 4 times.

However, this generous calculation doesn't account for the front-loaded grant activity in 2009. By calculating the ratios annually and then averaging the annual ratios over the 3-year period, the average ratio for the three-year period was actually nearly 18 to 1, salary and benefits expense to grants.
 

bakercape

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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.
 

jspotila

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

How many staff do you have? Are they paid more than other people working in nonprofits?

The Associations staff is just eight full-time people, working from very modest office space in Charlotte. Two of our staff members, CEO Kim McCleary and chief financial officer Kris Hopkins, have been with the Association for nearly 20 years and three others have 10 years of service or more. This is unusual for the nonprofit sector, where turnover can be high. This longevity is one of the Associations assets and it provides our staff with a deep understanding of the history and the challenges of CFS and the movement.

Each year, a committee of the Board evaluates the performance and compensation of the chief executive officer. Our annual audit by an outside firm includes a compensation review according to market and sector norms compiled by sources such as Guidestar, Abbott/Langer, the National Compensation Survey, Charlotte Chamber of Commerce, Department of Labor, Chronicle of Philanthropy, North Carolina Center for Nonprofits and American Research Company. The compensation levels paid to our staff members are below regional and sector norms; staff salaries have been frozen since 2008 to reflect the economic pressures on the organization and the community in general. Any differences in compensation levels since this time period reflect differences of timing of pay periods, rather than salary changes. Outside observers frequently comment on how "lean" and efficient the staff is compared to other organizations and companies.
 

mojoey

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

Going through your tax statements, I found a much more alarming discrepancy. Why is it that in the annual report, the management and general expense is listed as $135,042 in 2007 and $135,675 in 2008 while in the respective tax forms, the salaries and benefits expense is listed as $924,226 in 2007 and $655,042 in 2008? This means that the salaries and benefits expense in this 2-year period is nearly SIX times greater in the tax forms versus the financial statements reported in the annual report.

Will the CFO please explain the discrepancy?
 

mojoey

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More on compensation versus research expenses:

Jennifer Spotila
Why is research 45% of expenses in 2009? http://cfids.org/cfidslink/2010/010607.asp#8s

Is membership declining? http://cfids.org/cfidslink/2010/010607.asp#5s

Are salaries off pace with other non-profits? http://cfids.org/cfidslink/2010/010607.asp#2s

Read the facts and make an informed choice.
about an hour ago Like
Looklikeheaven Feellikehell
Research used to be a much lower percentage than 45%. I am happy more money was put towards research.
46 minutes ago Like
Corvid Corax
From the 2009 IRS tax form filed by CAA at: <http://www.cfids.org/about/2009-990.pdf>

2009 Expenses Part IX, lines 1 & 3 on pg 10 of pdf
Grants and other assistance to govt. and org. in US 306,048
Grants and other assistance to govt. and org. outside US 83,333

Total grants $389,381
Total 2009 revenue (part I, line 12) $1,161,591
=34% of revenue towards research, correction from the 26% in previous post
27 minutes ago Like
Corvid Corax
Jennifer.. Question, how do you get a figure of 45% towards research based on data from IRS form?
20 minutes ago Like
Joseph Chang
Hey Jennifer,

I'm glad to see that research allocation is increasing. However, I make all my value judgment on multiple-year trends. I do hope to see that 55% research allocation achieved for 2010 and beyond.

Based on a multi-year analysis from 2007-2009, here is breakdown:

Salary and benefits expense as a percentage of total expenses: 37%

Research expense (using the more generous research allocation stated in the annual report) as a percentage of total expenses: 20%

Grant expense (using the IRS tax forms) as a percentage of total expense: 9%

In fact, 2009 was the only year salary expense percentage came within earshot of research expense percentage, and it was still far off from the actual grant expense percentage.
8 minutes ago Like
Joseph Chang
There are many ways to justify executive compensation. You can pull out all sorts of regional, national, sector, industry numbers and surely you will find numbers that beat CAA's salaries. That is not the point. The point is that compensation should be relative to performance in any industry, and a sensible measure of your performance is how much have you achieved in the way of your stated mission: "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."

One sensible way of measuring how much you've stimulated research is to look at how much you've actually spent on research. Do you not see a problem when over a 3-year period, the amount that spent on research expense is $1.3 million, and the amount that you've compensated executives for stimulating & investing in research is twice that amount at $2.6 million?
 

bakercape

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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
 
C

Cloud

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

jspotila

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

Why is it that in the annual report, the management and general expense is listed as $135,042 in 2007 and $135,675 in 2008 while in the respective tax forms, the salaries and benefits expense is listed as $924,226 in 2007 and $655,042 in 2008?
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
 

jspotila

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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
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.
 

jspotila

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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
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.
 

bakercape

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Thanks for the reply

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.
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?
 

Sing

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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
 

illsince1977

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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.
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.
 

jspotila

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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?
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.
 

jspotila

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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.
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).
 

jspotila

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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?
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.
 

Cort

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Nowhere in your mission does it state a need to remain inflexible and insistent on a particular approach to advocacy. The CAA reminds me of monolithic companies that are have attained a monopoly in their area (the CAA has clearly been the face of CFS in the political arena for the last 20+ years), and gets so complacent in its ways that once a legitimate competitor arrives (WPI) instead of adapting to a changing environment it hunkers down further into its stance to resist the tides of change.
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.
 

Cort

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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.

The truly successful organizations are always the adaptive ones, and in no time has this been more true than now, in a globalized hyper-informed world. You can choose to continue hunkering down and defending yourself with "but this is not our style" or you can choose to adapt to the changing needs of your target audience. You keep insisting that you're doing real research that excludes XMRV or retroviral pathology, but it's become transparently clear to some of us patients that this is a sign that you see WPI as a threat, not a partner.
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...............

I repeat: results speak louder than words. When we see specific plans to fund XMRV there will no need for all this posturing. Your constituency is aghast. I don't mean this in an offensive way whatsoever, but realistically if you were a publicly listed company and we were your shareholders, we would've demanded a different approach that is based on results-oriented advocacy and thorough investigation of retroviral pathology. Don't you understand? .
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.