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

 

Thanks Jennie for letting us know more about CAA. Your contribution to transparency for CAA is important. CAA is doing some good things. It's not going to come as a surprise i have some (hopefully constructive) criticism on some points.

Where does the CFIDS Association stand on a name change for the organization now and in how it refers to CFS in its literature?

It was a remarkable moment at the CFSAC meeting when Dr. Mangan made than announcement! More than ten years ago, the Board of the Association specifically reserved all right to make Association policy on the name change. When the CFSAC voted unanimously in 2003 that [A] change to another name should occur only when there is a better understanding of the pathophysiology of the illness, the Board issued a statement on the Associations name change policy. (http://www.cfids.org/advocacy/c-act_12112003.asp) Now that the CFSAC has voted unanimously to recommend that the Department of Health and Human Services use the acronym MS/CFS, the Board will revisit its own policy. I expect the Board to consider these issues very soon.

I can't find it now in your interview, but you said that "CFS" patients deserve many things including a name change but that Association resources are limited. A good and obvious start would be to call our disease ME. CDC, the press and the public will never call it something other than "CFS" if we patients and our advocates don't first. How can CAA ask others (including our persecutors) to take a cost-free (but important) step that CAA itself won't take?

I feel this choice to call the disease "CFS" is emblematic of CAA's general failure to advocate for us, or even communicate the full truth. That CAA lags behind NIH, a research institution that has consistently persecuted us, in the effort to change the name from "CFS" is pathetic imo.

The Association has a paid professional staff of just seven full-time people, working from very modest office space in Charlotte, NC (the same space since 1992). I believe that our staff members are unsung heroes in the fight against CFS. They work very long hours, and are paid less than the regional and sector norms. After the economic downturn at the end of 2008, the Association was forced to lay off five staff members, but the workload did not decrease. The remaining staff members took on the work of those five people and continue to produce high quality results. I wish that every CFS patient could meet our staff members. They bring as much fire and commitment to the fight to solve CFS as any patient or family member directly affected by the illness.

I have not met the staff, but they do seem like heros to me. My thanks to them for their hard work. I do not understand why Ms. McCleary does not take a paycut from her $178,000 salary when it means that every staff member will either be laid off or have to do twice the work. A leader should serve the org and its constituents, not vice versa. This is emblematic of her poor leadership, imo.

Funding at NIH is extremely tight for all research, but especially for CFS research...

Funding for CFS cannot increase at NIH unless there are more applications submitted by capable researchers who want to study CFS

I think this misrepresents the NIH funding situation. Funding seems appropriate, not tight, to me for almost every disease except ME. NIH's excuse that they do not fund ME research much because the quality of the grant apps are low is disingenuous at best. It seems that in relation to the pittance of funding NIH offers that the number of fundable apps is high, not low.

 

Thanks Justin! I thought we would hear from you

The NIH has been saying that a) grant applications aren't very good in general and b) there are very few of them for years. B is certainly true. The question I ask is...if ME/CFS does effect up to I million people in the US - shouldn't the NIH be doing something to increase grant application rates and researcher interest? Thankfully we do have the Workshop coming up but this is the first Workshop/conference the NIH has sponsored in 8 years I think it is and they have made no promises about an ROI grant coming out of it. Meanwhile funding levels are substantially lower than 10 years ago.

 

Jennie,

When the issue of CEO compensation has been raised, you've told us that CAA's ($178,000) is at or less than comparable salaries for similarly situated non-profits. Here is some info from charitynavigator.com 2010 non-profit CEO salary survey.

For small charities (total expenses <$3.5 million) in the South the median CEO salary is $91,750 (n= 212 charities).

http://www.charitynavigator.org/__asset__/studies/2010_CEO_Compensation_Study_Revised_Final.pdf


For health charities in North Carolina focusing on a "disease, disorder or discipline" the average salary is $144,000 (n= 8). Keep in mind the average expenses for these charities was $24.5M while CAA's was about $1.2M.

http://www.charitynavigator.org/ind...r&cgid=5&cuid=13&rgid=8&stid=25&Submit=Submit

Sector Analysis Tool

Define the sector you would like to analyze:
Category: Health
Cause: Diseases, Disorders and Disciplines
Region: South
State: North Carolina

Category
Sector Average
(8 Charities)

Total Revenue
$24,221,637

Total Expenses
$24,452,951

CEO Salary
$144,603

Primary Revenue Growth
11.2%

Program Expense Growth
5.0%

 

Thanks Jennifer for the inside story.

B) there are very few of them for years. B is certainly true.

I know a few scientists in other fields and I will tell you they don't bother to apply for particular funding unless there is significant chance of that funding being granted. (B) is a self-fullfilling prophecy.

 

Hi Justin, hopefully I can clarify a few things.

I can't find it now in your interview, but you said that "CFS" patients deserve many things including a name change but that Association resources are limited. A good and obvious start would be to call our disease ME. CDC, the press and the public will never call it something other than "CFS" if we patients and our advocates don't first. How can CAA ask others (including our persecutors) to take a cost-free (but important) step that CAA itself won't take?

Here's another part of my answers in the interview: "The Association's Board has supported a name change since the term "chronic fatigue syndrome" was first introduced in 1988. Our position remains that CFS is misleading, and that it does not adequately describe the serious and complex nature of the illness. The Board is excited by the latest high visibility dialogue about the issue and the prospect for progressive action by government agencies. We are actively discussing the latest research and policy developments and their impact on the illness definition and name. At this time, the Board has not made a final decision about changing the name of our organization."

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 do not understand why Ms. McCleary does not take a paycut from her $178,000 salary when it means that every staff member will either be laid off or have to do twice the work.

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.

Funding seems appropriate, not tight, to me for almost every disease except ME. NIH's excuse that they do not fund ME research much because the quality of the grant apps are low is disingenuous at best. It seems that in relation to the pittance of funding NIH offers that the number of fundable apps is high, not low.

As Cort said, generating more high quality applications to NIH is a necessary piece of the puzzle. But the Association knows this is not the only piece! I said in testimony to the CFSAC myself that "If you build it, they will come. If there is funding, researchers will apply." The Association regularly drives this message home in meetings with NIH. It is also part of the thinking behind Kim's testimony to the CFSAC in the fall, where she urged the CFSAC to adopt the autism model and develop a single strategic plan for the federal response to CFS. I think we can all agree that the voting members of the CFSAC have a better grasp of what (and how much) is needed than most federal employees.

 

When did you get sick?

Thanks Jenny for advocating. I'm sure it is hard, especially for someone who is sick.

I notice you got sick in October. I got sick in November. I wonder if there is some commonality. I asked Dr Vernon this question to see if she could look at the questionaires we all submitted to the cfsaa and she hasn't responded to me yet. I wonder if a lot of the "sudden onset" patients got sick in Oct/Nov and if so, is it from the flu shot? Seems like an easy thing to check.

 

Jennie, how much is Kim's salary now? How much does she donate?

This interview with you was apparently written before Unger was permanently appointed at the CDC position.

Jennie, the CAA reportedly just yesterday sent out e-mails recruiting for this study, which is raising serious concerns about its possible effect on the continuation of research into XMRV.
Have you read this?
http://cfschronicles.blogspot.com/

 

Thanks Jenny for advocating. I'm sure it is hard, especially for someone who is sick.

I notice you got sick in October. I got sick in November. I wonder if there is some commonality. I asked Dr Vernon this question to see if she could look at the questionaires we all submitted to the cfsaa and she hasn't responded to me yet. I wonder if a lot of the "sudden onset" patients got sick in Oct/Nov and if so, is it from the flu shot? Seems like an easy thing to check.

I did get sick in October 1994, and I have heard anecdotes about that being a common time for people to get sick with CFS. I did not receive a flu shot that year, so at least for me, there is no correlation.

 

Jennie, how much is Kim's salary now? How much does she donate?

I am not permitted to release Kim's salary number myself under confidentiality agreements. I wil double-check, but I believe the policy also prevents me from disclosing the dollar amount of any specific donor.

This interview with you was apparently written before Unger was permanently appointed at the CDC position.

Yes, Cort and I have been working on this for a long time.

Jennie, the CAA reportedly just yesterday sent out e-mails recruiting for this study, which is raising serious concerns about its possible effect on the continuation of research into XMRV.

The Association is not involved in the funding of or conduct of the NIH study. We are not providing BioBank samples for the study. We are not involved in actual recruitment or evaluation of patients for the study. The Association publicized the study because we believe it is of interest to patients. "The researchers are specifically trying to reach individuals who have already been tested for XMRV so they can compare the results of their new tests with the results obtained using other tests. People with positive or negative results will be eligible to participate. The NIH will share samples obtained in this study with other laboratories that have tests for XMRV. The goal is to determine which kind of test is best to detect XMRV. All participants will understand and give written consent before any samples are obtained, tested or shared. Participants have the right to withdraw from the study at any time."

 

Dr. Mangan, the new Liaison to the CFSAC committee for the Trans NIH Working Group startled many when he announced the first change he would make to the program would be to put 'ME/CFS' on the website.

Will the CFSAC be renamed the ME/CFSAC? This may seem a bit tangential but it's not unimportant as I think it furthers the shift to inclusion of the term ME by starting "at home" and leading by example.

 

Thanks Jennifer for the inside story.



I know a few scientists in other fields and I will tell you they don't bother to apply for particular funding unless there is significant chance of that funding being granted. (B) is a self-fullfilling prophecy.

I completely agree Snow Leopard and I didn't mean to suggest otherwise. I did an Freedom of Information Act specifically to find out what the average acceptance rate was for first time grants. (They always threw in continuation grants for already approved studies -which inflated things) and the figure was 6 or 8%. It jumped up to 25% when you just looked at grants applied for under an RFA - which is why it's so important that an RFA opportunity come out of the International Workshop...

A major problem has obviously been the makeup of the CFS SEP committee - which had little knowledge of CFS and scored most grants very poorly. MY FOIA showed that something like a quarter of all applications, if memory serves, were rejected, unscored.
We know that the last CFS SEP committee was full of ME/CFS researchers - so that should help grant acceptance rates considerably. Unfortunately we also know that Dr. Klimas said the # of grant applications coming into that panel was 'pitiful' or something like that - but I assume that will change as word gets out that. I specifically asked Dr. Friedman to make an announcement to IACFS/ME researchers that the panel was finally open for business.. He didn't say that he did or didn't - so I don't know if he did.

 

Will the CFSAC be renamed the ME/CFSAC? This may seem a bit tangential but it's not unimportant as I think it furthers the shift to inclusion of the term ME by starting "at home" and leading by example.

That's a good idea. I hadn't even thought of that....I wonder if it would just take an amendment.

I see that it takes more

That's why the Association is eagerly awaiting an explicit decision on the CFSAC's recommendation that ME/CFS be used throughout DHHS.

That will be very interesting...

 

Jennie, how much is Kim's salary now? [/url]

I hope we can get this straightened out. 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.

 

I hope we can get this straightened out. 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.

Thank you for saying that Cort. $178,000 is excessive in anyone's book. Especially given the dire state of funding our disease is in, and the fact that many of us are living at or below the poverty line. I really don't understand how Kim McCleary can justify that amount of remuneration.

 

I hope we can get this straightened out. 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.

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.

I would like to add from the Association's FAQ page that "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." Our independent auditors certify that the salary is within market and sector norms, and I think that opinion carries significant weight. In addition, given the breadth and amount of the work our CEO does, we could not hire one person to replace her (if we wanted to, and we don't). Two or three people would be required to replace her experience, skill set, and work product. If you multiply the figures from these surveys times two or three people, then clearly, the Association is getting a bargain.

I believe it is important to measure any organization by its numbers, but also by its results. Does the organization accomplish what it sets out to do? Is it making a difference? Is it producing good work? That's the most important standard, in my opinion, and many metrics can flow from those questions. The Association meets or exceeds the program goals that we set. Have we finished the job? No. Is there more work to do? Yes. Are we satisfied with the federal response to CFS (short term and long term)? Hell no. Do we have a strategic plan that will bring the field closer to discovering objective diagnostic biomarkers and successful treatments? Yes. Can we do it alone? No, we cannot.

 

The Board sets the salary -believe me, I know

The most important thing for me is the work the CAA is doing. If that's the salary then it's ALOT of money..It irks me that it seems high because I think the CAA's Research Initiative has the promise to do so much. Aside from XMRV there's nothing I can see that has so much potential. I think it has the potential of taking years and years off our fight against CFS. To have this issue displace discussion and support of that is unfortunate but this is an issue the CAA has to deal with..

For me there are more important things to deal with - but I get this is going to stick in peoples craws.....there's no avoiding that...

 

I hope we can get this straightened out. 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.

This has been a real sticking point for me. I have been very close to canceling my donations to the CAA and simply donating directly to the research efforts that I find most compelling. I have personal experience with a world-wide non-profit with an annual budget of over $35 million, 500 employees, 8000 volunteers a year, and lobbying efforts in nearly every state in the nation as well as on the federal level. The director's salary is $120 K. He was a founder and has been with the organization for over 20 years. Only a small handful of employees (six?) make over $100K - most of whom are Ph.D level or the equivalent.

Kim McCleary's salary accounts for an astronomical percentage of the CAA's budget when compared to nearly all other non-profits (according to Guidestar and Charity Rating). These are not inconsequential numbers as organizations such as the United Way will not allow contributions through work place payroll deductions when charities fail to meet efficiency criteria upon which the CAA has repeatedly fallen short.

This is a serious issue and does not reflect well upon the overall health and leadership of the CAA (even in light of the demonstrable defectiveness of their research efforts - personally, I'm glad that the CAA is pursuing research beyond XMRV/MLVs and I do hope that at the same time they are keeping serious pressure on the NIH to ensure all measures are taken to fully investigate the potential role of any and all potential causes/associations - infectious agent or not - with ME/CFS).

As I have said before, the CAA is a small organization and I wonder if it might become more effective if it focused its efforts on what it appears to do best - seed research with the potential to grab a larger piece of the federal funding pie - while supporting the creation of complementary organizations (without the historical baggage) to assume the lead role in ME/CFS advocacy, lobbying, and physician education/outreach efforts. The CAA's appeal and fund raising efforts seem hamstrung by patient distrust stemming from controversial past associations with the CDC. Their efforts seem limited by an insular (defensive? Not that they have not been vigorously criticized/attacked) stance that fails to take advantage of an ocean of potential volunteers and donors - separated by a wall of distrust and (aside from Jennie), a paucity of real two-way communication (the webinars have been great but were predominantly the dissemination of information and not a conversation).

In brief, the CAA needs to find a way to partner in a much larger and more meaningful manner with those for whom it presumes to advocate.

The issue is not one of a lack of resources, it is a lack of trust and the failure to presume good faith for all involved, the CAA and ME/CFS patients, a recipe for an agonizingly slow and protracted decline into irrelevancy. resources exist in many forms and an advocacy organization working with a unified patient population on a common message is powerful. Some days I get the sense that Kim McCleary has fallen into the trap of feeling like she is fighting this fight alone (with little support from a large segment of those she it trying to help). That alone ought to be reason to pause and reassess.

ETA - CEO total compensation for the non-profit referred to above - $150K. That said, from my perspective, the primary problem is the size of the pie and past actions by the CAA (under the direction of Kim McCleary) that have limited the size of that pie. If the CAA was connecting with the patients it is trying to represent and the pie was growing, I would still think it a bit over-sized but I could get over the size of the piece being claimed by Ms. McCleary.

 

The Board sets the salary -believe me, I know

The most important thing for me is the work the CAA is doing. If that's the salary then it's ALOT of money..It irks me that it seems high because I think the CAA's Research Initiative has the promise to do so much. Aside from XMRV there's nothing I can see that has so much potential. I think it has the potential of taking years and years off our fight against CFS. To have this issue displace discussion and support of that is unfortunate but this is an issue the CAA has to deal with..

For me there are more important things to deal with - but I get this is going to stick in peoples craws.....there's no avoiding that...

Please let me repeat and be clear. $178K is not the salary, it is salary plus the value of all benefits. It IS a lot of money. And Kim's work is worth that compensation. The independent auditors' opinion is that the compensation is consistent with market and sector norms.

 

Please let me repeat and be clear. $178K is not the salary, it is salary plus the value of all benefits. It IS a lot of money. And Kim's work is worth that compensation. The independent auditors' opinion is that the compensation is consistent with market and sector norms.

Jenny, whether $178,000 is the "salary", or "the salary plus benefits" is of little concern to those of us too sick to work. The fact is, it is $178,000 less to be spent on research. Research that we so desperately need right now (e.g. XMRV).

I would strongly disagree that Kim McCleary or anyone else is worth that kind of money. Paying Kim McCleary lots of money is not going to cure us. It will however make the CAA look bad.

IMHO you should worry more about what people with ME/CFS think about a $178,000 remuneration package, and less about what some "independent auditors" think. I suspect these independent auditors have not had their lives destroyed by an untreated retroviral infection and 25 years of government / institutional neglect.