Article: CFIDS Association Of America Interview with Jennifer Spotila

Article: CFIDS Association Interview with Jennifer Spotila

You can view the page at http://forums.aboutmecfs.org/content.php?348-CFIDS-Association-Interview-with-Jennifer-Spotila-cfs-me-cfs-phoenix-rising

 

I'm getting a couple of things from this - everybody has their points

1. the salary appears to be high relative to published industry norms
2. Jennnie reports there are some reasons; part of the increase comes from Kim's longevity in the job; another increase comes because benefits are a part of it...and that she works far more than 40 hours a week.
3. we don't know if the average salaries quoted include benefits or not and it would be good to get a relative figure of what benefits packages cost
4. Jennie reports that an independent auditor took into account a wide variety of sources and concluded that the salary was in the realm of market norms. This audit is something, that I now know from experience, is something non-profits are required to do to remain in good standing
5. Jennie has some points and....for a generally poor population it is still a startling sum...The angst is understandable - we are a cash poor group and we need to bend every resource to our goals...CBS has pointed out a CEO with similar years of experience at a bigger company that is getting at least somewhat less (plus benefits). Jennie has stated Kim is well worth it... Let's focus on twhat the CAA is doing or not doing.

 

[*]Jennnie reports there are some reasons; part of the increase comes from Kim's longevity in the job; another increase comes because benefits are a part of it...and that she works far more than 40 hours a week.
[*]we don't know if the average salaries quoted include benefits or not and it would be good to get a relative figure of what benefits packages cost

I don't know of a single person in a comparable position that works less than a 50 hour work week. These people get paid to accomplish measurable goals and not to be watching the clock. $178K buys the expectation of some personal sacrifice and people in these positions ought to be measured by whether or not they lead the organization to the achievement of those goals. Falling short in an area such as significant budget contraction is a red flag. Repeated budget stagnation or contraction is a clear sign that something is amiss and that essential connections to the community are not being made (and are possibly being lost). Sometimes "capable people" are simply no longer the right fit for a particular position, regardless of their qualifications or experience. At the Director level, communication and connection (read - fund raising - directly tied to the limits of what an organization can accomplish) are a huge part of the game.

 

Several points:

- CEOs should be paid on the basis of their skill set, recent accomplishments and their vision for the future; not on how long they have warmed a chair
- In fact, I would argue that 15 years (or whatever) is too long. New blood, new thinking and new energy is required. Dealing with CFS patients and politics is difficult and this should be acknowledged by the BOD.
- I would be okay with aggressive compensation but only as a reward for extraordinary achievements - something I have not seen with CAA.
- $178K is just too much for Charlotte, NC and a relatively small STATUS QUO non-profit organization.
- I know CEOs of larger private sector companies with lower compensation packages in the Boston area where the cost of living is much, much higher.
- As in the private sector, it should be recognized that the CFS "market" is extremely poor and low margin; therefore the pay should be lower. You cannot compare CFS to similar organizations that deal with cancer or heart disease, etc. Comparisons matter.
- Independent auditor? I have some nice land in Florida for you...
- How independent is the Board? Is the BOD running the show or Kim McCleary? Has she handpicked the Board so that they are beholden to her or the other way around?

 

- How independent is the Board? Is the BOD running the show or Kim McCleary? Has she handpicked the Board so that they are beholden to her or the other way around?

I don't think it has to be a matter of the BOD having been handpicked to ensure longevity (which I sincerely doubt has happened). However, a point related to your comment about longevity is that BOD's become comfortable with a director (even admire a work ethic and develop friendships that make objective, quantitative decisions harder) and BODs can forget that it is their mission to guide, not retreat into a position of defense. In the case of the CAA, I suspect that there has developed some amount of understandable "bunker" mentality as the organization has been the target of fierce criticism and when that happens, it's extremely hard to get un-stuck as every possible move seems fraught with real peril.

 

This is the same argument as for those overpaid directors of big financial institutions "they are worth it"
what does that mean ? that doesnt tell me anything.
would kim not work as hard for less money? Is it the money that makes her work? maybe we should find someone with some more intrinsic motivation then? That seems to be more cost effective to me.
Nobody is irreplaceable.

 

Here's my take.

- CEOs should be paid on the basis of their skill set, recent accomplishments and their vision for the future; not on how long they have warmed a chair

In the research area the CAA does have a tremendous vision for the future. The Research Initiative and Biobank have the potential to speed up research in CFS tremendously.

They provide researchers ready access to well described patients. This can lesson the time for research dramatically. Researchers have a miserable time putting together good patient cohorts in this very heterogeneous population but with the Biobank you simply characterize everything you can - including past test results - and then allow researcher to look for subsets. They can pick out low blood volume patients, HHV6 positive patients, XMRV positive patients, etc. etc...it makes developing subsets easy. Plus every time a sample is used you gather more information about that patient....This could allow researchers to accomplish in a one year what they might take them five.....

Plus having standardized protocols - a huge problem in CFS - means that you get real answers instead of what we've often got - more questions....Then there's the idea of an actual network of researchers sharing results and incorporating them back into their studies as they proceed.

I agree Kim's salary seems high for a smallish organization in a money poor field. Its an astronomical amount of money for me - but the CAA has a very compelling vision of the future of ME/CFS research and Kim produced that on her watch...

Making good on that vision, however, will require something CBS alluded to - the ability to connect with the community - and this is where the CAA is lacking....this and other discussions present that pretty clearly. It's not an easy field to do that in...almost anything you do is going to get you bashed by someone.....but its necessary if the CAA is going to do the things they want to do.

 

I don't think it has to be a matter of the BOD having been handpicked to ensure longevity (which I sincerely doubt has happened). However, a point related to your comment about longevity is that BOD's become comfortable with a director (even admire a work ethic and develop friendships that make objective, quantitative decisions harder) and BODs can forget that it is their mission to guide, not retreat into a position of defense. In the case of the CAA, I suspect that there has developed some amount of understandable "bunker" mentality as the organization has been the target of fierce criticism and when that happens, it's extremely hard to get un-stuck as every possible move seems fraught with real peril.

This is a real problem. I was told the AIDs community was the same way when the cause of AIDS was unclear....and I encounter it myself now - much to my dismay at times I think communication is the key....

I would note that here, again, we have Jennie being the face of the CAA. I hope others from the Board and other parts of the CAA show up in this discussion. If they are going to turn this around that's the kind of effort that's needed.

 

I don't think it has to be a matter of the BOD having been handpicked to ensure longevity (which I sincerely doubt has happened). However, a point related to your comment about longevity is that BOD's become comfortable with a director (even admire a work ethic and develop friendships that make objective, quantitative decisions harder) and BODs can forget that it is their mission to guide, not retreat into a position of defense. In the case of the CAA, I suspect that there has developed some amount of understandable "bunker" mentality as the organization has been the target of fierce criticism and when that happens, it's extremely hard to get un-stuck as every possible move seems fraught with real peril.

My concern is the possibility of the CEO (ie Kim) manipulating the BOD or that perhaps the BOD is the real problem. In the past I have worked on behalf of BODs assessing executive performance. In my experience, the BOD can be just as much of a problem as the CEO and executive staff. And much of the time it comes down to the BOD blowing off their responsibility for true oversight and due diligence as to what is really happening in the organization, ie they get bamboozled by the CEO whether for personal reasons or pure negligence. CEOs can be awfully good at making pretty Powerpoint Presentations and putting on the charm.

If an organization is constantly operating out of the bunker, that should be a clear sign for radical shakeup of the BOD and CEO.

 

Here's my take.

Making good on that vision, however, will require something CBS alluded to - the ability to connect with the community - and this is where the CAA is lacking....this and other discussions present that pretty clearly. It's not an easy field to do that in...almost anything you do is going to get you bashed by someone.....but its necessary if the CAA is going to do the things they want to do.

Not connecting with her constituency! Yes, I would say this is a major black eye and a large part of the reason why I have a problem with her salary. I agree 100% that being out there in public is not an easy thing to do and she will get bashed but I think it's part of the job to be out there taking her lumps. That is the hard part of a non-profit advocacy. I've been involved in these sorts of things and it sucks but it's a large part of your role.

So in saying this I would like to thank Jennie for taking her lumps and doing what she can to put a happy face on CAA. I certainly don't agree with a lot of what she says but I really respect the fact that she is here. Kim should be doing these sorts of things too.

 

Several points:

- CEOs should be paid on the basis of their skill set, recent accomplishments and their vision for the future; not on how long they have warmed a chair
- In fact, I would argue that 15 years (or whatever) is too long. New blood, new thinking and new energy is required. Dealing with CFS patients and politics is difficult and this should be acknowledged by the BOD.
- I would be okay with aggressive compensation but only as a reward for extraordinary achievements - something I have not seen with CAA.
- $178K is just too much for Charlotte, NC and a relatively small STATUS QUO non-profit organization.
- I know CEOs of larger private sector companies with lower compensation packages in the Boston area where the cost of living is much, much higher.
- As in the private sector, it should be recognized that the CFS "market" is extremely poor and low margin; therefore the pay should be lower. You cannot compare CFS to similar organizations that deal with cancer or heart disease, etc. Comparisons matter.
- Independent auditor? I have some nice land in Florida for you...
- How independent is the Board? Is the BOD running the show or Kim McCleary? Has she handpicked the Board so that they are beholden to her or the other way around?

In general, with the exception of Judy Mikovits and a few other people at the WPI, I cannot think of a single person associated with ME/CFS who hasn't been a player for 15+ years.

Some of these folks are good, hard-working people. I'm grateful to them for their service.

However, it's clear that despite their efforts, not much good has come for us. We're in the same place that we were two decades ago.

Inviting new people into the community seems like a good idea. And choosing a new person to be the head of the CAA seems as good a place as any to start.

Best, Lisa

 

Salary survey figures are based on a few factors: 1) typical non-profit CEO tenure is 5 to 7 years; 2) a 40 hour work week; 3) salary only, not the cost of benefits.

In the Association's case: 1) the CEO has 20 years experience; 2) works substantially more than 40 hours a week; 3) the published salary figure is salary plus all benefits due to the structure of the benefits plan.

The charitynavigator report is based on the info reported on IRS form 990. I can't find any indication that it's based on a 40 hour work week. It's based on actual salary. Are you saying the average non-profit CEO only works 40 hours per week? CAA reported on the 990 form that Ms. McCleary worked 40 hours per week and earned $156,500 (with $13,700 in additional compensation) and Dr. Vernon worked 40 hours per week and earned $138,100 (with $1,100 in additional compensation).

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

I think there is a potential power struggle between agencies, and patients could be the ones who get hurt. If one agency (NIH) uses ME/CFS and another agency (CDC) uses CFS, how will the press or the public deal with that? That's why the Association is eagerly awaiting an explicit decision on the CFSAC's recommendation that ME/CFS be used throughout DHHS. In the meantime, CFS is the name with the broadest recognition in the press and other venues, and the Association has already fielded inquiries from journalists who are confused and frustrated by the federal government using two different names. The situation is evolving, and the Board will continue to discuss developments as they arise.

I don't understand this logic at all. What power struggle? How could patients be hurt if "ME" gets in there alongside the misleading "CFS"? Why are you concerned that the press or public would be confused that NIH and CDC use two different names. The press already contacting you about this is a golden opportunity to make this into a story about how messed up CDC and the name "CFS" are that even NIH (one of our biggest persecutors) is siding with patients on the name and not waiting for CDC to change it.

It sounds like you are saying that you are going to wait until every agency and committee within HHS changes the name to include ME before you start using ME! That CAA's plan is to drag its heels on the name change (which it admits is necessary) more than CDC is. This boggles my mind!

 

The charitynavigator report is based on the info reported on IRS form 990. I can't find any indication that it's based on a 40 hour work week. It's based on actual salary. Are you saying the average non-profit CEO only works 40 hours per week? CAA reported on the 990 form that Ms. McCleary worked 40 hours per week and earned $156,500 (with $13,700 in additional compensation) and Dr. Vernon worked 40 hours per week and earned $138,100 (with $1,100 in additional compensation).

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



I don't understand this logic at all. What power struggle? How could patients be hurt if "ME" gets in there alongside the misleading "CFS"? Why are you concerned that the press or public would be confused that NIH and CDC use two different names. The press already contacting you about this is a golden opportunity to make this into a story about how messed up CDC and the name "CFS" are that even NIH (one of our biggest persecutors) is siding with patients on the name and not waiting for CDC to change it.

It sounds like you are saying that you are going to wait until every agency and committee within HHS changes the name to include ME before you start using ME! That CAA's plan is to drag its heels on the name change (which it admits is necessary) more than CDC is. This boggles my mind!

And this is just so typical. State YOUR position. Enough hand-wringing already. Make the news, don't sit around standing by to report it. The only question on any matter should be what best serves the patients, not which way is the wind blowing.

 

Regarding CAA's funding of research and scholarly publications, let me reiterate that we desperately need funding for work that supports our advocacy as directly as possible. I think it was in a NY Times article that Dr. Vernon said that the science is there but that it doesn't seem to get to the physicians. CAA (and all of us) should focus on bridging that gap. What happens is that Wessely and his cronies write tons of review articles in journals and these are used as sources by the authors of future studies and of medical textbooks. When a physician wants to learn about ME he reads one of these faulty sources. When a lay person wants to learn about ME he reads the news media articles, cdc webpage or the wikipedia "CFS" entry. All of these are very biased as we all know.

CAA (and the rest of us) should fund studies and review articles that will have an impact in this bridge area. Pretty much any idea for a study Leonard Jason has while sitting on the can should be immediately funded! We need more review and analysis articles in med journals laying bare the fake science behind the psychogenic propaganda and laying out what the disease really is and how mistreated we are. Jason, Twisk and Maes, the CCC authors, Angela Kennedy, Gerwyn etc. could do a lot more with some relatively modest funding/ stipends. Pretty much the only thing preventing the wikipedia article being a 10 page rant written directly by Wessely is some cites to Prof. Jason's articles, the CCC article and the single Maes and Twisk review! And even getting these cites from getting constantly erased has been torture for those ME patients who "edit" the page, since these are supposedly in journals that aren't prestigious enough to be mentioned- on wikipedia for christ sake!

 

Jennie,

I do really really want caa to make the changes that most patients who have posted on the topic of caa on PR want them to. Kim McCleary seems to be a hard worker and smart person and has a lot of experience. It would be great if she could become more aggressive and vocal in her stance for us. (don't know if this is possible since she doesn't seem willing to change in this direction enough; it seems maybe her personality is fundamentally too much to the side of 'be part of the mainstream and don't rock the boat too much' for this job). caa is doing some good things with a limited budget, and with some relatively easy and low cost changes it could really be incredibly effective for us, maintain it's 'leadership position' and enjoy the strong support of patients including me. I really want to be able to cheer Ms. McCleary and CAA on!

 

Several points of clarification: salaries for everyone at the Association have been frozen since 2008. Kim's salary is not $178K per year; that number is articifically inflated due to changes in pay periods. Kim is in the very top tier of donors to the Association. Incidentally, the staff routinely reaches 100% participation in donations to the Association, despite the fact their salaries were frozen and their workload doubled.

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.

Compensation of officers, directors, trustees, & key employees 309,450 (up 8%)
Other salaries and wages (unnamed) 272,110 (up from $0)
Other employee benefits 23,282 (up from $0)

 

I looked at the site Justin pointed out - and punched in different metrics as well as the ones he did - looked at patient support groups, medical research, and some others and according to all the figures there - the salary, as quoted, is really very high...particularly given the average size of the other institutions is much higher. I don't know how else to interpret those figures.

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 has the CAA's overall score come up lowest, their 2 star rating is below other comparable non-profits.

No. of Stars ** Qualitative rating - Needs Improvement, Description - Meets or nearly meets industry standards but underperforms most charities in it's cause http://bit.ly/gQ3HJ

To learn more about how they interpret their figures, there's a FAQ at http://bit.ly/eJLygX

 

I just ran across the following on an act up website - http://www.actupny.org/documents/CDdocuments/CDindex.html

It says what I was trying to say better than I ever could.

"Those who profess to favor freedom, yet deprecate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightening. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle. Power concedes nothing without a demand. It never did and it never will." Frederick Douglass

 

The CAA is actively funding significant research studies that have attracted additional funding from other sources. The CAA educates patients and professionals via webinars. It has established a BioBank to provide a consistent data base for future studies, including XMRV. Kim McCleary, the staff and the BOD (all volunteer, elected and not appointed) are very dedicated and all work extremely hard. Previous comments suggest there is room for improvement. What specific changes are you suggesting?

 

The CAA is actively funding significant research studies that have attracted additional funding from other sources. The CAA educates patients and professionals via webinars. It has established a BioBank to provide a consistent data base for future studies, including XMRV. Kim McCleary, the staff and the BOD (all volunteer, elected and not appointed) are very dedicated and all work extremely hard. Previous comments suggest there is room for improvement. What specific changes are you suggesting?

Impatient patient......can you say more about studies that have attracted additional funding from other sources.......what additional funding from which sources?

 

The CAA is actively funding significant research studies that have attracted additional funding from other sources. The CAA educates patients and professionals via webinars. It has established a BioBank to provide a consistent data base for future studies, including XMRV. Kim McCleary, the staff and the BOD (all volunteer, elected and not appointed) are very dedicated and all work extremely hard. Previous comments suggest there is room for improvement. What specific changes are you suggesting?

Using Leonard Jason's estimates, there are roughly 800,000 to 1 million ME/CFS sufferers in the US who meet the conservative Canadian Consensus Diagnostic criteria. The US prevalence of MS is approximately 250,000. There are nearly four times the number of ME/CFS patients meeting the Canadian Consensus Dx Criteria than there are MS patients in the US.

And yet the funding for ME/CFS research has boarded on (actually has been at times) criminally negligent. Some significant portion of this is due to the efforts of the CDC and NIH to marginalize CFS. These organizations accomplished these goals in the face of a deafening silence amongst an abused, fractured and battered ME/CFS patient population.

Rather than acting as a unifying agent, the CAA has actually been a source of sharp divisions and much contention in the ME/CFS community. For several years, the CAA placed a premium on working with the very organizations that were marginalizing ME/CFS patients and who have consistently and dramatically reduced funding for research. I am well aware of the good intentions of the CAA but the bottom line is that in many ways, these were failed policies. If you look at funding alone, I have difficulty coming to any conclusion other than the CAA policies have had little impact outside of their Biobank and the small number of projects they fund directly.

It is time to reassess. If the CAA had focused on the needs of the ME/CFS patient population and been more patient centered and less "top down," could the CDC and NIH have succeeded in marginalizing and fracturing a united front of advocacy organizations and patients? The CAA's entire current budget is between one and two dollars a patient. I know from my own experience that many times in the past I hesitated to donate as I did not feel that the CAA was representing me. After watching events unfold over the last year, I find it impossible to conclude that most ME/CFS patients, their families and their friends are indifferent to the point of refusing to contribute to an advocacy org. Patients and their families are aching for an organization they can get behind without reservation ("Does this group really represent me or at some point down the road will I find myself having to counter material that I paid for the to distribute to my doctor?").

The disconnect between ME/CFS patients and the CAA is not something that will simply heal itself and that until the CAA connects solidly with their constituents, they will forever under perform (as an organization, not as individuals) do to a lack of support and stable funding for their research efforts.

I am a strong supporter of the CAA as an effective organization to seed promising research and I especially appreciate their efforts to identify a biomarker.

Concerning research, the present mess that is the cohort question in ME/CFS continues to be a source of confusion and a tool of obfuscation for researchers holding a range of preconceptions surrounding ME/CFS patients. Clarifying the cohort question should have been and remained a top priority from the day the organization was created. It is outrageous that we are still arguing semantics and definitions after 25 years. Someone needed to step up and make a stand against what they knew was wrong at the time. The CAA should be at to forefront of these efforts today and yet I see interest, not leadership.

Another area in need of attention is that of disability support. Efforts to identify a biomarker are needed but a biomarker alone does very little to put food on the table or provide housing for those amongst us with the greatest need. Given the small size of the CAA, I know they can't do everything. I just don't think that after 25 years the small size of the CAA was a foregone conclusion.

We are not weak, and we are not uneducated. We are divided, frustrated and often too wounded to feel like the effort is worth the cost when we are not working together.

To be direct, the CAA has managed to find itself alienated from its deepest and potentially most devoted supporters. Strength in advocacy is found in numbers.

From the outside (which is the perspective from which most of see the CAA), the problem appears to be a failure to connect with (even alienation of) those they purport to represent and a "go it alone" style that makes their job much harder than it has to be and at the same time limits the magnitude of the CAA's can accomplish. This has not been the result of a failure of effort or dedication. From my perspective, it appears to be a lack of vision, focus and leadership.

Hundreds of millions, if not billions, of dollars are donated every year to MS charity and advocacy organizations. With four times the number of seriously ill patients, an annual budget of less than 2 million dollars for CFS's (by which definition?) largest advocacy organization is nothing less than heart breaking and it is clearly not acceptable.