Jennifer Spotila was Chairman of the Board of the CFIDS Association of America from 2008-2009 and is a Board member today.
Can you briefly tell us your story with chronic fatigue syndrome (ME/CFS)?
Jennie’s Story – I was working as an attorney in Philadelphia when I got sick in October 1994. My doctor insisted I just had “a virus” and so I pushed myself very hard to work through it. After three months, I asked for a one-month leave of absence from my firm. That was sixteen years ago, and I’ve been unable to work since then. I’ve written about my experience with CFS several times, and even had the opportunity to appear on NBC Nightly News in 2006.
Here you are, a former attorney, still disabled after 15 years – you’re not in any manner healthy – why do you still participate? Many people have been ill for as long as you have. I think we can say there has been a general shift in how many doctors view this disorder (they don’t know what to do with it but they don’t overtly trash it) but treatments are still very limited and we still have a lot of unresolved issues on the research front and elsewhere . Why should someone like that – who hasn’t seen much real change in their circumstances over time – support the CFIDS Association?
Living with CFS is discouraging, more so than other chronic illnesses. After sixteen years, I am still disabled and sometimes I just want to stay in bed (both physically and emotionally). I want the respect, support and treatments that cancer, diabetes, and cardiac patients typically receive. Sometimes, it seems less painful to step aside and let other people do the heavy lifting in the fight against CFS. Why should any severely ill CFS patient have to be an activist? I understand why people get frustrated and say there has been no progress. The only measure of success that really matters to PWCs is a cure. Everything else is a stepping-stone.
But progress will come faster if more people get involved, and if more resources are invested in finding solutions. In order for CFS to be widely understood, diagnosable, curable and preventable, the entire CFS community must come together. Other organizations – including but not limited to the IACFS/ME, Whittemore-Peterson Institute, and PANDORA – have equally important contributions to make. Patients and their loved ones must speak out. Researchers must not only do their work, but we need them to talk to their colleagues and each other.
The CFIDS Association has a unique focus: “To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” The Association is pursuing every aspect of that strategy, and is doing so at the national level. We believe that this strategy is the shortest path to solving CFS, and it is also designed to maximize the Association’s unique experience and skill set. We have the expertise, knowledge and drive to make that strategy a reality.
This is no time to be discouraged, or to step back from the fight against CFS. Those of us who have been diagnosed with CFS must be involved, especially because there are so many more ill people who have not yet been diagnosed. If each one of us helps with the heavy lifting now, I believe we can make more progress in less time. And this is what we all want: a cure that makes the hard work of advocacy a thing of the past.
Board of Directors
What types of people are on the CFIDS Association’s Board? How often do you meet? What is the Board’s role?
The Board’s role is pivotal to the functioning of the CFIDS Association. In non-profit governance, the Board of Directors sets the mission and strategies for an organization. This is true for us, and the Board has conducted extensive strategic planning for the Association. If you think of the Association as a car, with the staff as the engine and mechanical parts, then the Board of Directors sits at the steering wheel and decides where to go.
The Association’s Board of Directors is currently comprised of fifteen members. Seven of us have CFS, with functionality levels ranging from complete disability to partial recovery. The other eight Board members are deeply connected to CFS through family members, close friends and professional endeavors – including Kim McCleary, our chief executive officer. All Board members serve as unpaid volunteers.
Service on our Board is demanding. We meet monthly by telephone conference call. We also meet in person two or three times per year, as resources permit, for more intense planning and discussion sessions. During my time on the Board, a number of Directors have been disabled and housebound, including myself. I became so ill after the first day of one meeting that I was unable to attend the second day at all. The Association’s by-laws require that a significant percentage of Directors be CFS patients.
The organization exists to serve the CFS community, and having that perspective on our Board is essential. Everyone on the Board invests substantial time and energy in the organization because we believe in the Association’s mission: “For CFS to be widely understood, diagnosable, curable and preventable.”
Relationship with CDC
The CAA has had a tangled history with the CDC. It played a major role in uncovering the CDC’s misuse of funds in the 1990’s, then partnered with the CDC in the Media and Physician Education campaigns and then turned around a published a harsh critique of it and called for new leadership in 2009. Just what is your relationship with the CDC?
The CFIDS Association was instrumental in exposing the misappropriation of $12.9 million in CFS research funds at the CDC between 1995 and 1998. The Congressional hearings and GAO investigation resulted in restoration of that money to the CFS research program over a period of several years, during which the program expanded its laboratory and clinical studies.
The Association competed for, and was awarded, contracts from CDC for provider education and public awareness campaigns. The public awareness campaign, the first of its kind for CDC, generated hundreds of media stories in national and local print, television, radio, online and wire outlets. The photography exhibit traveled to 36 public venues and nine medical provider conferences, generating coverage in the top 25 media markets. The public service announcements received more than one million “impressions” or views by the public. Many of the news media stories included quotes from then-CDC Director Dr. Julie Gerberding and physicians like Dr. Anthony Komaroff.
But after 2006, the CFS research program at CDC inexplicably slowed and changed. The publication rate dropped, and the program stopped holding meetings to explore research and clinical issues related to CFS. By 2007, it was clear that CDC wanted to move the provider education program towards a psychosocial approach to CFS. As Kim McCleary told the CFSAC in November 2007: “We were concerned about the type of information that was being provided through the contract and the requirements that would be imposed for the continuation of the contract.” The Association declined the opportunity to renew the provider education contract. Instead, we obtained a large private donation that paid for the creation and publication of the CFS continuing education course through Medscape. In one year, the Medscape course was completely by more than 30,000 healthcare providers.
In March 2008, the Association asked for a Congressional inquiry into program direction and funding accountability through a letter sent to Senate Majority Leader Harry Reid and other influential members of Senate and House. Over the next six months, we closely examined the expenditures and activities CDC reported, although CDC staff didn’t seem concerned by the lack of outcomes for the millions that had been spent and obligated to the program.
At the October 2008 CFS Advisory Committee meeting, Kim McCleary went public with the Association’s concerns, comparing the CDC program to the “Bridge to Nowhere” and calling for new leadership in the program. But in December 2008, an external peer review panel issued a surprisingly positive endorsement of CDC’s program. This endorsement was used by CDC to inoculate the program from other criticism, and at that point, the focus shifted to developing a five-year plan, as the reviewers recommended.
In 2009, the Association called upon the CDC to make its accumulated research data available to other researchers, as required under federal law. The Association conveyed its concerns about the CFS research program to acting CDC director Dr. Besser and Congressional appropriators. At the session for public comment on the program’s five-year plan and the CFSAC meetings, the Association called loudly and clearly for new leadership and the reinvigoration of the research program. Advocates and the IACFS/ME expressed the same demand over and over, until it was clear that only the CDC believed the program was on the right track.
As you know, Dr. William Reeves was reassigned and Dr. Elizabeth Unger became interim head of the CFS Research Program. The CDC is currently searching for a permanent program chief. Apart from these personnel changes, the CFS program does not appear to have changed much. Relocation to a new building and additional restructuring at CDC seem to have occupied much of the internal attention at the CFS program. I think the jury is still out on whether the program will radically improve its direction and focus, or continue to pursue old priorities. The Association continues to insist upon rigorously conducted CFS research into biomarkers and other physiological processes.
Federal funding is very important for many nonprofit organizations. There’s simply no other source of money like the federal government. But every dollar, even every research dollar the federal government puts into an organization comes with strings attached – the federal government is going to have its say on how its money is spent. For instance, the SPARKS program generated a lot of money for public awareness but it also came with a very conservative CDC toolkit, which, while it did not suggest that CBT was a cure, nevertheless gave it a rather prominent place. This obviously did not make many CFS patients happy. How do you determine when the pluses of federal funding outweigh the negatives or vice versa?
First, it is important to understand that federal funding falls into two general categories – grants and contracts. Extramural research funding, such as that provided by NIH, usually takes the form of grants. The NIH gives money to a researcher for a specific proposal, normally channeled through the researcher’s university or institution. The research proceeds with some oversight, but not detailed supervision. Federal contracts are variations on fee for product/service; the federal government pays a contractor to provide a product or service, with varying levels of oversight.
The CDC-funded physician education and public awareness campaigns were fee for service contracts, and involved CDC approval of each deliverable. The Association bid on these contracts because we believed that our participation in those education efforts would result in more patient-centered messages than CDC might have created otherwise. There was no other CFS organization that had the capacity or infrastructure to take on this kind of work. The Association feared that if we did not participate in the contracts, CDC would either engage a contractor with no knowledge of CFS or would do the work on its own.
The CDC oversight of these contracts did mean that the Association did not have exclusive control over the content of deliverables. As the CDC’s approach moved toward a psychosocial model of CFS, the Association made the decision not to seek renewal of the physician education contract. The public awareness contract is also complete.
We have no intention to seek new contracts from CDC, although we have applied for research funding from the NIH and Department of Defense and will evaluate other federal funding opportunities that are fully consistent with our mission and strategy. There were many positive outcomes of the public awareness campaign, in particular, but the Association also learned difficult lessons from both contracts. I cannot categorically say that the Association would never seek another federal contract at all, but I don’t think the Association would enter into a federal contract under the same terms as the CDC contracts.
Public Policy/Public Relations
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. The IACFS/ME joined the ME/CFS (CFS/ME) club several years ago as have several other US and UK organizations. The CFIDS Association of America has two opportunities, as I see it, to embrace change in this area; changing the name of the organization, and changing how the organization refers to CFS in its literature.
Changing the first name of your organization to ‘ME/CFS’ Association or something similar, is difficult, for sure, since you are known as the ‘CFIDS’ Association yet ‘CFIDS’, while an admirable attempt to get away from ‘CFS’ did not, unfortunately, catch on. ME/CFS, on the other hand, brings a historical balance to the name, emphasizes ME and yet allows for continuity in the research and other fields and is catching on in Europe and the US. 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 Association’s 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.
Robert Miller, Rivka and Charlotte von Salis initiated an advocacy ‘action’ at the CFSAC meeting. The CAA recently referred to the ‘inside work’ they do with regards advocacy; this action, on the other hand, was definitely ‘outside’; it was created by a few patients, it had a strong visual component and was embraced by some people who have yearned for a more aggressive approach to advocacy. Did the CAA support Bob’s effort and where does it stand on similar efforts?
Ms. McCleary was happy to have the action group stand with her when she gave her public testimony at the meeting. The Association absolutely supports the involvement of other groups and individuals in advocacy efforts, and further recognizes that a broad range of tactics is needed to be successful. The “inside voice” editorial that you reference specifically acknowledges this, and was a statement about how the Association will do its work. It did not say, and it is not the Association’s position, that other forms of action should not be used. We will pursue our strategy designed to maximize our expertise and resources. There is more than enough room for other approaches, and we hope the community can be mutually supportive of all these efforts. We all share the same goal.
The CFIDS Association has a reputation for being a very professional but also quite a conservative organization; something that was demonstrated by the CAA’s rather cautious approach to the XMRV finding. Why the cooler approach in such an inflammatory subject?
After the October 2009 publication in Science, the Board directed that the Association serve as a source for credible scientific information, as well as pursue strategies to ensure an adequate federal response and accurate replication and validation studies. We did not drop any of our other initiatives, but asked the staff to take on this additional effort that mushroomed as the press and scientific community took notice of the XMRV finding.
Since that time, the Association has published numerous articles on XMRV, MLVs and subsequent studies. We hosted a webinar on XMRV with Dr. Cindy Bateman in January, another with Dr. Vincent Racaniello and Dr. Bateman in July, and another on blood safety with Dr. Louis Katz. The Association also published a Q&A on XMRV featuring answers from many prominent scientists. Our summary of the NIH XMRV Workshop has been received very well, and circulated outside the CFS community.
Both Dr. Vernon and Kim McCleary are serving on federal committees related to blood safety issues raised by the Science paper. Immediately after the Science publication, Dr. Vernon began fielding inquiries from researchers interested in pursuing this promising research, linking laboratory researchers with qualified CFS-expert clinicians. The Board believes that the Association must serve as a catalyst for the highest quality research and scientific consensus on CFS, including XMRV. While some may call this a cool or cautious approach, I think it serves a critical need for the CFS community.
You can argue that the CFIDS Association has been on the wrong side of public opinion on a couple of key issues. The organization helped fund the Name Change effort about 10 years ago but after the CFS federal advisory committee (CFSAC) voted to unanimously table the issue the CAA backed away as well. You can argue that the CDC’s sway over naming rights to diseases and with our own federal advisory committee saying “No” to change putting time and resources into it would have been a mistake but most patients still desperately wanted a name change and you caught a lot of grief for that.
Ditto with the CDC contract to run the media and physician education programs; maybe the CAA was right to leverage the CDC’s funds to inform the public and physicians about this disease but some people just couldn’t handle seeing their patient organization having anything to do with the CDC. Some people accused the CAA of being in cahoots with the feds and even proposed that the organization was dependent on federal funding to stay afloat.
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.
First, let me state that the Association is not dependent on the CDC contracts to keep operating. To the contrary, the Association decided not to seek further contracts with CDC even though this meant a drop in revenue in the short-term. When it became clear that the CDC’s approach to provider education was evolving into a psychosocial paradigm, the Association declined further contract opportunities. We did so because it was the right thing to do. Kim McCleary publicly criticized CDC at the October 2008 CFSAC meeting because the CDC’s program deserves criticism. She took this public stance despite the risk it might have posed to the contracts we had at the time.
Given the Association’s limited resources, we must focus on issues that are both highly important and likely to succeed. CFS patients need objective diagnostics, helpful treatments, educated healthcare providers, public awareness, support, information, advocacy, the name change, and enormous federal investment in research. No CFS organization can meet all these needs; the resources are not there.
The Board must make difficult choices, trying to achieve the most success within the organization’s limitations. We examine all sides of the issues, taking into account the state of CFS research, what the CFS community and our donors tell us, and economic and political realities. We must also consider what resources we have, and where we have the opportunity to make the greatest difference. At the end of the day, the Board has to make tough calls on strategy and priorities. There will always be people who disagree with those decisions, and Board members don’t always agree with each other either. But that is the role of a Board in the non-profit world: to make difficult decisions about how to spend very precious resources.
The CAA has always funded research – but with the 2008 Research Campaign and the hiring of Suzanne Vernon as your first Scientific Director Research seems to have been given top priority. Why the increased emphasis on research?
The Board of Directors engaged in a rigorous strategic planning process, asking what the Association was most qualified to do and what work was most needed to help the CFS community. Ultimately, the choice was very clear. Research is the ONLY pathway to treatments and a cure for CFS. It is the only hope we have of regaining the lives we’ve lost. The Association adopted the strategy that will get us to treatments and a cure: To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. All of our work flows from that strategy.
How has having Dr Vernon on board changed the organization?
I first met Dr. Vernon during the satellite media tour for the public awareness campaign in November 2006. At the time, Dr. Vernon was working in the CDC’s CFS research program. I was very impressed by her ability to explain CFS science to lay people. Dr. Vernon was interested in my experience as a CFS patient, and displayed empathy for patients that I did not expect from a government scientist. When Dr. Vernon joined the Association as our Scientific Director in November 2007, I was thrilled. It was immediately apparent that she would “raise our game” through her knowledge, credibility, and ideas. The Association’s approach to research has been shaped in part by her contributions, and I think we’ve made impressive progress in just three years.
Research Network – The CFIDS Association is also attempting to build an International Research Network that will produce standardized research protocols, create a WIKI to enhance researcher collaboration and include the patient Bio Bank. This Network is big project that would take a lot of work and presumably a lot of money. The CFIDS Association, like many other non-profits right now, doesn’t appear to have hardly any money. How can you do this when money is so tight?
The Association’s research program is designed to get more bang for the buck. For example, our six direct-funded grants are designed to help researchers accumulate the data needed to secure much larger funding from NIH. Dr. Gordon Broderick has turned our $100,000 grant into $4.5 million in funding from NIH and the Department of Defense. That is an extraordinary return on our investment!
Another example is the Association’s SolveCFS BioBank. Some organizations, such as those for Parkinson’s and multiple sclerosis, are spending millions of dollars to build bio-repositories. Obviously, the Association does not have that kind of money. But having well-characterized samples and data already screened and ready to go has the potential to accelerate research projects. So instead of giving up on the idea, the Association joined Genetic Alliance and we’re using their state-of-the-art infrastructure to build a CFS BioBank for a fraction of the cost that other organizations incur. The SolveCFS BioBank collects and stores blood, cheek swabs and clinical data from CFS patients and healthy controls. The samples and data will be available for use by approved researchers to identify biomarkers, as well as explore the causes of and potential treatments for CFS.
The strategic elements of the Association’s research program form a powerful catalyst for CFS research. The Network links researchers and their data. The direct-funded grants look at all the body systems that are affected by CFS. The BioBank helps researchers begin their projects sooner and cheaper. The Banbury Meetings bring researchers together to share information, identify new hypotheses, and form new collaborations. All these pieces fit together and reinforce each other. Each piece is essential to accelerating the pace of CFS research and bringing real solutions to patients. The Association believes it is critical to build a broad based, diverse and comprehensive research strategy since we believe it offers the greatest chance for success.
Fukuda Definition –How to define CFS is an important and complicated question. Where does the CAA stand on the current Fukuda Definition? Does it need to be changed or is it sufficient as kind of broad baseline definition that, whatever its flaws, at least has a lot of scientific work attached to it?
The trouble with the Fukuda definition is two-fold. First, as you say, it has a lot of scientific work attached to it. Even papers published within the last year still use the 1994 Fukuda criteria. Abandoning that definition completely will not happen without broad-based consensus on new criteria. However, the second problem with the Fukuda definition is more insidious. The CDC attempted to standardize application of the definition with objective measures in its 2005 “empiric definition” paper. CDC refers to this definition as the “revised Fukuda criteria” but that is a misnomer. As Dr. Jason has shown, the 2005 criteria casts a broad net and identifies many people as having CFS when in fact they have major depressive disorder. The Association does not support the use of the empiric definition in CFS research, and has repeatedly urged CDC to abandon use of the criteria.
Canadian Consensus Criteria – Dr. Jason has (or is in the process) of developing an operationalized model of the Canadian Consensus Criteria definition that will allow it to be used for research purposes. Does the CAA support moving towards a CCC like definition that requires two hallmark symptoms for a definition of CFS; postexertional malaise and cognitive problems.
The criteria for participation in the SolveCFS BioBank require a person with CFS to have post-exertional malaise (the Fukuda definition does not require it). We are working with Dr. Jason to ensure that the clinical questionnaires used by the BioBank gather reliable data that will help overcome some of the definitional challenges in CFS research. In addition, the Association’s research focus on biomarkers and objective diagnostics is motivated in part by the urgent need to establish once and for all whether a person has CFS or another fatiguing illness.
There are challenges in trying to implement the CCC for research. The definition was written for clinical use, as there are no other current clinical criteria (Fukuda was written as a research definition). The Carruthers, et al. paper that sets forth the CCD is not in a PubMed-indexed journal, and so is not widely available to clinicians or researchers. There is a critical need for validated clinical and research criteria that accurately capture the true CFS population.
CBT – the CAA in various publications has reported that CBT programs can help to reduce some symptoms for some patients but we’ve had 15 plus years of CBT work in ME/CFS now. Is it time to call for an end to CBT studies and move on? Where does the CAA stand on further CBT study?
When the Board and staff were considering the Association’s research priorities and drafting the 2008 Request for Applications, we explicitly decided that we would not fund any CBT research. CBT may help patients cope with having a disabling chronic illness, but it is not a treatment for CFS, any more than it is a treatment for cancer or heart disease (although it is commonly used in those conditions as well).
How does a small organization like the CFIDS Association effect change at the NIH – a much larger as well as much more complicated institution than the CDC. What can you do?
Funding at NIH is extremely tight for all research, but especially for CFS research. Advocating for CFS research funding in proportion to the burden of the illness is a central part of our public policy program. Dr. Francis Collins, Director of NIH, showed personal interest in the relationship between XMRV and CFS through his attendance at portions of the 1st International Workshop on XMRV held at NIH in September 2010. We need to leverage that interest, and the studies currently underway at NIH, into significant investment in extramural CFS research. Funding for CFS cannot increase at NIH unless there are more applications submitted by capable researchers who want to study CFS, so our strategy also includes making this area more appealing to researchers.
NIH is not the only source of government research funds, however. The Association succeeded in its effort to include CFS as an eligible topic for the $50 million Congressionally Directed Medical Research Program (CDMRP) for fiscal year 2011. This is a first! The budget is currently suspended until after the November elections, but the Association will work to protect this designation and the other funding priorities we successfully proposed. (http://cfids.org/cfidslink/2010/080404.asp)
ME/CFS really is an illness that was made for the Internet. Any changes in the CAA’s internet presence in the near future? With Facebook the CAA interacts every day with patients. Has having the Facebook site and that kind of interaction changed the organization? When are you going to get a new website?
I cannot imagine what I would do without the easy accessibility of email and the Web. The Association is committed to maximizing web-based tools that enhance our work. For example, we developed a twice-monthly free webinar series to provide in-depth information to patients around the country, and post recordings of the webinars to our YouTube channel. The CFIDS Link, a free monthly newsletter, will continue. The Association’s Facebook page has given us a new way to interact with the community. I also hope that we will have the resources to undertake a redesign of the Association’s website.
All these tools are time and labor-intensive for the Association’s staff, and require resources that would otherwise be allocated to the research and public policy programs. However, the Board and staff both recognize that these communications vehicles are worth the investment. Facebook, Twitter, YouTube, etc. provide us with more ways to communicate with all the stakeholders in the CFS community. Not only can the Association get information out, but we can take in information, questions and opinions in more ways as well. The staff and the Board welcome this input, and new projects like the regularly updated FAQ page have grown from this interactive conversation.
What excites you the most about the CFIDS Association today?
The Association’s targeted approach to research and public policy is producing results. XMRV research has given us the opportunity to bring our expertise and knowledge to an entirely new group of researchers and policy makers. The SolveCFS BioBank has grown faster than we originally projected, and new collaborations are forming. Our funded research investigators are publishing their data and securing new funding. Every time the Board receives an update on operations from Ms. McCleary, I want to pump my fist and shout “Yes!” We have made more progress on our goals in the last year than I imagined was possible.
What do you see the CAA doing in the next five years?
The Association’s strategic plan looks ahead five years, and the Board believes that our research and public policy strategy will be relevant through that time. However, as the XMRV finding shows, research results can change paradigms and strategies. The Association has built flexibility into its strategy so we can be responsive to such developments.
What would a CFIDS Association with 20,000 members and a budget of $10,000,000 a year look like? What would it be doing?
I would love to see the Association have at least $10 million a year, and more! Resources at that level would allow the Association to pursue objective biomarkers, diagnostics and treatments even more aggressively. We have many more ideas and opportunities than we can afford, and I have not encountered another organization in any context that does as much as the Association with such limited resources. As the Association’s revenue increases, I expect that programs will expand exponentially.
Where do you think the organization is strong and where do it think it could do better?
One of the Association’s greatest strengths is the extraordinary drive and expertise of our CEO and Scientific Director. The Board has the great luxury of setting our direction, knowing that Ms. McCleary and Dr. Vernon will make it happen. A perfect example of this is the Association’s research program. In less than three years, we reinvented our grant program, raised $1 million to support that program, created the research network, made more than $600,000 in direct grant awards (our largest to date), brought researchers together at the Banbury conference, and launched the SolveCFS BioBank.
In any organization, there is always room for improvement. One area that we continue to work on is recognizing what we can and cannot do. No group can do everything well, especially with the limited resources of the Association. So we have had to make difficult decisions about allocating resources to our strategic focus – research and public policy.
The biggest obstacle for the Association is the need for more resources. More money would help us expand our research program, spend more time in Washington advocating for federal research funding, improve our communications vehicles, and hire the staff we need to make all this happen.
Looking back at your years on the CFIDS Association Board of Directors what was a highlight for you and what was a low point?
Without a doubt, the highlight of my chairmanship is the strategic planning process that the Board and staff undertook in 2008 and 2009. I do not take credit for the work or the end results, but it was exciting and rewarding to serve as Board chair at such a pivotal time for the Association.
Equally clear is my personal low point – the recognition that I cannot do as much as I wish to do as a Board member and CFS advocate. After devoting two years to the chairmanship, I realized that I was unable to continue at that pace without risking serious health consequences. I am honored to serve as the Board’s secretary this year, and very excited about what Adam Lesser brings to the chairman’s role.
How many people work at the CAA and what kind of offices does the CAA work out of? From what I’ve been reading in contrast to other recessions this recession has had a tremendous impact on many nonprofits. How has it affected CFIDS Association?
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.
The CFIDS Association has a kind of confusing financial structure. There are membership dues and there are donations from individuals. As I understand it the two go to fund different parts of the organization. Can you explain how that works? Membership levels appear to have been declining for about 10 years. Why do you think this is? What effect does it have on the organization? Does the organization have other means of funding?
In 2009, the Board of Directors undertook an analysis of the Association’s membership structure and the role of membership in non-profit organizations. We found that membership structures are now used mainly by professional societies and educational institutions, like bar associations and alumni groups. Ten years ago, individuals depended on organizations like the Association to provide information on the illness, research and other developments. But now all this information is available for free online. For example, an archive of Chronicle articles is available for free on the Association website.
The Board felt that asking CFS patients and others to pay for access to information that is readily available for free did not make sense. In addition, individuals cannot take tax deductions for dues, while donations are fully tax-deductible. As a result of this analysis, the Board voted to revise the Association’s structure to eliminate membership. This decision was announced last year, and the North Carolina Secretary of State approved amended Articles of Incorporation formally revising the Association’s structure on April 28, 2009.
The Association is now structured like most other non-profit organizations. All donations are fully tax-deductible for the donor. Anyone who makes an annual gift of $35 or more receives our print publication, SolveCFS, three times a year. Our monthly e-newsletter, CFIDSLink, is free to everyone regardless of whether or not they have donated. The Association tracks not only the number of gifts and total revenue, but also the number of CFIDSLink subscribers (almost 20,000), the number of Facebook fans (almost 4,600), and hits on our websites.
The Association has always depended on gifts above the old membership fees to sustain and expand operations. The success of the $1 million Campaign to Accelerate CFS Research in 2008 is a clear message from our donors that there is widespread support for the research agenda. We continue to raise funds to support both research and public policy activities. Donors may restrict their donations to a particular program, but it is important to remember that the programs do not exist independently of the Association itself. Donations keep the lights on, pay the rent, and so on. These expenses must be met in order for the research or public policy programs to continue. The Association would have difficulty carrying out its research activities without basic infrastructure. This is why I encourage donors to make at least part of their gifts unrestricted, meaning the Association can apply the money where it will be most useful and efficient.