The CFIDS Association: the Last Ten Years – An Overview

January 26, 2011

Posted by Cort Johnson

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4863-McCleary.jpgIn 2001 Marc Iverson resigned from the CAA Board citing different priorities and a different vision for the organization. He envisioned an organization that would become a hub for patient activities on the internet and had his view prevailed presumably we would have seen forums, blogs and physician and treatment review sections and things of this sort.

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Kim McCleary, on the other hand, envisioned an organization that would build a voice for chronic fatigue syndrome with important policy makers such as the medical community, the media and elected officials and leverage federal assets to get the word out.

Both had their positive sides; Marc’s vision would surely have made the CAA more beloved in the community and enhanced patients understanding of their disorder while Kim’s vision focused more getting doctors, researchers and public officials and other policy makers to recognize that ME/CFS is a serious disorder and respond accordingly.

The Name Change Effort

The two visions of the CAA were never more apparent than when the organization decided not to further pursue a name change – one of the Marc Iverson’s chief goals. The CFIDS Association had provided resources for the federally (CFSCC) mandated name change inquiry in 2002 but when the new federal advisory committee (CFSAC) unanimously voted to not further pursue the effort the CFIDS Association followed suit without protest. The CFSAC argued that with the CDC holding the last card on any official name change (for any disease) and its intransigence on CFS well known that putting further energy into it was pointless.

With CFS’s own federal advisory committee recommending against pursuing a name change the chances of getting one were slim to none but the issue was strongly supported by patients laboring under such an demeaning name and the CAA’s decision to drop the effort was unpopular in many quarters. Whether to view the decision as a simply pragmatic one by a support group that needed to shepherd precious resources or as a red flag that the group that was out of touch with the community depended on one’s interpretation.

Media Campaign

4874-FacesofCFSjpg.jpgThe CFIDS Association went on after Mark’s resignation to make inroads in the public policy field. The organization scored a major triumph in 2004 when it pressured the newly formed National Center on Health Marketing at the CDC to mount its first media campaign on CFS. The 6 million dollar media campaign began in 2006 and formally ended in 2010 when the last Faces of CFS exhibit appeared. It included full-color ads in Ladies Home Journal, People and other popular magazines, news stories in magazines, TV and radio spots and a traveling ‘Faces of CFS’ exhibit put together by a prize winning photographer George Lange, that traveled from city to city over the next four years that emphazed ME/CFS was a real and serious disorder. Prominent ME/CFS professionals who signed onto the campaign included Lauren Hillenbrand (Honorary Campaign Chair) and Drs. Bateman, Bell, Jason, Komaroff, Klimas, Lapp and others.

The process of educating and informing the public culminated in a 2006 Press Conference at the National Press Club hosted by the CFIDS Association that had the head of the CDC, Dr. Julie Gerberding, for the first time, publicly proclaiming that yes, CFS was a major and serious disorder. It was a remarkable turnaround for an agency that not long before had been raked over the coals by the General Accounting Office for misusing funds dedicated to CFS. Dr. Gerberding was seconded by Asst. Secretary of Health Dr. Paul Agwunobi who pledged further assistance from the National Institutes of Health. The event highlighted the CDC’s CFS research team’s highly visible success when the Pharmacogenomics journal devoted an entire edition to its work on CFS.

With the media campaign in full swing 2007 would be big year with the CAA charting more than a story a day (>400) appearing on CFS in the mainstream media. By the end of 2007, 12,500 public service announcements (PSAs) on television and 25,000 PSAs radio would be run, generating $2.2 million in free air time. The ‘Faces of CFS’ exhibit would appear in 17 public hotspots across the country directly exposing approximately 5 million people to basic facts on ME/CFS.

Physician Education Campaign

the Media Campaign coincided with a Physician education campaign. The CAA had made physician education a key focus in the early years of the 21st century but it entered into a new field of endeavor when it collaborated with the Centers for Disease Control to mount a physician education program. The program involved a new website, a physician toolkit, online physician education course, a Train the Trainer program staffed by Dr. Jason, Dr. Friedman and Dr. Lapp, among others, and a CFS information center that was displayed at major medical conferences. The IACFS/ME, the Academy of Nurse Practitioners, American Association of Physicians Assistants and the Society of Women’s Health Research partnered with the effort.

4869-Physician.jpgThe collaboration with the CDC was not, however, a complete success. Kim McCleary had made good on her decision to ‘mainstream’ chronic fatigue syndrome as the CAA effectively leveraged federal assets to get the word out that CFS was a serious disorder but the Association went too far for some in the patient community when it engaged with the CDC to do so. The reception to CDC Chief Gerberding’s announcement at the National Press Club in Nov. 2006 that CFS was a serious and legitimate disorder illuminated what dangerous waters the CAA was swimming in. The announcement, by the head of the second largest medical research establishment, could have been interpreted as a breakthrough for a long maligned disorder but the reception on the internet forums revealed a harsh and unstinting dislike of anything CDC as they simply jeered Dr. Gerberding’s comments.

Compromises had definitely been made. While the CDC’s website did improve over time it had several problems, including a research page that ignored many findings and a conservative physician toolkit. Some patients were shocked to find the major Advocacy organization supporting a toolkit that, even if it did not suggest they were cures, emphasized coping and behavioral therapies and simply didn’t mention many treatments they found helpful. Hewing to the CDC’s requirement for evidence based treatments (clinical trials) was one of the costs of doing business with it; it was an acceptable cost for some and not for others.

CBT/GET

The CAA’s stance on CBT/GET would be a wedge issue for some patients. While the organization would never fund or promote CBT and indeed would devote all its research dollars to pathogen, immune, brain and other studies, its decision to hew to the research findings and report that CBT was successful in reducing symptoms in some patients would, at least in the online community, cause uproar after uproar. A publication on Treatment provided a good case in point; the placement of an article on GET by Dr. Peter White would surface again and again on the Forums while the more prominent placement of Dr. Peterson and other more acceptable physicians and treatments in the same paper would be ignored.

Movement Forward in Mainstreaming

One could argue that Kim McCleary’s attempt to mainstream chronic fatigue syndrome had been at least partially successful. While many factors and other players were involved, ten years after an NIH Scientific Conference on ME/CFS had threatened to focus almost entirely on behavioral issues a new NIH Workshop underway preparation would appear to be focusing entirely on pathophysiology. Few articles or websites in the US portrayed CFS as a psychological disorder and the professionals in the fielded tended to report their peers had undergone a sea change in their attitudes toward the disease over the past 10 years.

Breakdown in a Key Issue

Yet if CFS had gained some legitimacy in some areas, breakdowns had occurred in arguably the most crucial area – research funding. The decision to move the CFS research program from the NIAID to the ORWH (Office for Research on Women’s Health) had been a disaster for the disorder. Some innovative multidimensional research did emerge but the three CFS Research Centers were shut down and research funding declined precipitously. Already near the bottom of the NIH in funding, CFS remarkably, was, from 2006 to 2008, the only disease to decline a full 50% (some of which has been restored). The CAA’s inability to turn the funding problems around would hurt it greatly with the online community.

4870-Dollar_symbol.jpgThe CFIDS Association made several efforts to stem the tide. Language was inserted in several appropriation bills slamming the agency for its lackluster approach to the disease. In 2005 the Association authored a paper that indicated the agency was greatly exaggerating what it reported as its expenditures on CFS. In 2007 the Association used its Lobby Day as an attempt to get CFS incorporated into the Roadmap Initiative that appeared to hold promise for multi-systemic diseases. It was for naught and CFS remained stubbornly stuck near the bottom of the funding barrel at the NIH and at the CDC.

The inability to increase funding for ME/CFS or even, at times, halt the decline was a key issue for many and it was a difficult one for sure. The CAA was committed to change in this area and spent a substantial amount of money every year to employ a Lobbying firm with a record of success at the federal level to assist it. The fact that disorders allied with CFS (Fibromyalgia, Interstitial Cystitis, Pelvic Inflammatory Disorder, Irritable Bowel Syndrome, Temporal Mandibular Syndrome, etc.) dominated disorders at the bottom of the barrel funding-wise at the NIH indicated the institution simply wasn’t interested in providing substantial funding to these types of disorders. The fact that CFS was stuck in a small, backwater Office at the NIH – while the others, were, at least, allied with major Institutes – meant CFS had an even more uphill battle.

But had the CFIDS Association done enough to try and reverse the decline? Had it been able to rouse the community? Had it developed effective strategies? Some people felt the situation called for bolder advocacy and yearned for the opportunity to do that. A patient run effort by the Time for Action Campaign roused a great deal of enthusiasm. The newly formed MWPCA was able to raise a significant amount of money for a newspaper ad. These groups were ants compared to the CAA but they indicated there was a good deal of untapped energy in the Community. The CAA stated it supported such efforts and participated in one but that it was not the ACT UP type organization that many people wanted.

CDC

Meanwhile a problematic agency became more problematic. A new empirical definition in 2005 that discounted fatigue greatly and inserted emotional distress into the mix for the first time suggested the Agency was taking CFS into places it had never gone before. When a prevalence study using the new “Empirical Definition” suggested that CFS was four times more common than previously thought it became clear that the definition, if taken up by the research community, could potentially have a dramatic effect on research outcomes and how CFS was ultimately viewed.

4867-CDC_logoWeb.svg.jpgThe CFIDS Association again acted conservatively – it demonstrated concern and called for more studies but refused to take a stand on the issue disappointing patients who desired a firmer approach. The Association did give the Empirical Definition’s fiercest critic, Dr. Leonard Jason, airtime, but the fact that the Association used the CDC’s 4 million person figure in its ads to drive attention to the seriousness of the disorder incensed some patients and like many issues in the CFS community – pleased others! (The CAA did formally break with the ED later).

A further change in tone could be detected at the CDC when the CDC released a sexual abuse paper that was able to tie cortisol dysfunction in a subset of patients to childhood abuse and announced that future projects would include the CDC’s first ever CBT trial. Meanwhile the CDC cut ties to the innovative Dubbo project, stopped much of its Pharmacogenomics work and appeared to flounder after Dr. Vernon left the agency. The program’s performance at the IACFS/ME Conference in Reno was an embarrassment.

CAA/CDC Break

In 2008/2009 the CAA broke with the CDC in two significant areas. First, citing an overly conservative approach, it backed out of its Provider Education contract with the CDC and created its own Physician Education program. The new program, developed in collaboration with Dr. Lucinda Bateman and Dr. Charles Lapp provided a much wider range off treatment options and wildly exceeded traffic expectations during the year it appeared on Medscape. The CAA could point to the 35,000 physicians that took the course as a success in its efforts to educate health-care providers about this disease.

In late Oct. 2008, Kim McCleary presented substantial evidence of financial mismanagement at the CDC at the federal advisory committee (CFSAC) meeting and called for new leadership. Over the prior six months CAA had used its Capitol Hill contacts to uncover evidence indicating the CDC had spent over $4 million dollars on a still uncompleted stress speaking study. Remarkably the CDC’s own documents indicated their research group had spent more money simply enrolling patients in one study than 95% of CFS prior research studies had cost.

The CFIDS Association would go on to provide the only rigorous and detailed critique of the CDC’s CFS program and call for a complete overhaul the program, requesting that it be moved to the Chronic Illness branch of the CDC. Over time the IACFS/ME Association and the CFSAC panel would join the CAA in calling for Dr. Reeves’ removal – which occurred in mid 2010. In Nov 2010 the CAA took an aggressive stance towards the CDC’s personality studies and

Research Initiative

The continuing federal intransigence on research funding prompted the organization to take matters into its own hands and embark on its most ambitious project ever – a $1 million Research Initiative highlighted by the hiring of the its first ever Research Director, Dr. Suzanne Vernon, the former leader of the CDC’s CFS Research Lab.

4868-CAAResearchCampaignWeb.jpgThe ME/CFS community responded enthusiastically enough to cut a proposed two-year donation-soliciation project to just over one. Meanwhile Dr. Vernon enjoyed a remarkable year publishing six of her own research papers while shepherding 4 studies through the grant process. The CAA’s research scope proved to be broad and innovative indeed as it funded a series of interwoven studies on mitochondrial dysfunction of the brain, the gastrointestinal ‘metabiome’, nitric oxide and vascular problems, and muscle receptor abnormalities. The CAA also scored a win when one of its preliminary studies on endogenous retroviruses was awarded a major grant from the NIH – a rare occurrence in the field with a 8% success rate.

Dr. Vernon expanded her responsibilities when she became board member of the IACFS/ME and a member of the Health and Human Services Blood Working Group on XMRV. The CAA had charged her with invigorating the field at large. In 2009 she began to make good on that commitment. First the CAA in conjunction with the NIH held a three-day brainstorming session with 35 researchers at the Banbury conference center in Cold Harbor, New York. Remarkably, for a field that had shown great difficulty in attracting new talent, almost a third of the researchers were new to the field. In 2010 the CAA and Dr. Vernon (unsuccessfully) applied for two grants on autoimmune issues involving a large of array of researchers and research groups that had never before showed interest in ME/CFS.

4865-Banbury.jpgThe Banbury conference was a kickoff event for the CFIDS Association’s most ambitious project to date; an International Research Network designed to create standardized protocols, a central blood and tissue bank, a central databank and a collaborative environment. This network could provide expertise to those who needed it, samples to those who didn’t have them, and data for ME/CFS researchers to mine.

One could argue that the last couple of years had been some of the most fruitful in the organization’s existence as it created a new physician education program, successfully completed its largest research initiative ever, had documented numerous irregularities in the CDC program, and was launching an International Research Network that promised to greatly speed up research in ME/CFS. The Association’s Facebook page was finally giving it a chance to directly interact with patients and it had just completed a three day brainstorming session at the Banbury Conference Center – the first of its type in years.

Yet in an end of the year poll on the Phoenix Rising Forums the organization scored poorly in a poll of groups a ‘making a difference’ in ME/CFS. If the CAA was making a difference, the online patient community, at least, wasn’t getting it and membership levels were continuing to drop.

XMRV

The stunning XMRV announcement would find the organization treading familiar waters as the conservative stance it took was regarded with dismay by many and as evidence that the group was out of touch. The CFIDS Association ended up devoting substantial resources to covering XMRV; an update XMRV page was created, several articles were published, CAA personnel participated in several XMRV committees, several webinars were devoted to it and their first Biobank study, CAA collaborated with Glaxo-Smith Kline to look for XMRV in a cohort similar to the original Science cohort.

The Madoff scandal and recession hit the CAA hard, forcing it to relinquish five staff positions, and the glossy magazine format of the Chronicle was replaced by a paper newsletter edition.

In 2010 CAA rebounded, introducing a highly popular webinar program (20 total) on topics ranging from XMRV (4), to CAA’s research efforts (3), viruses in CFS, orthostatic intolerance, visiting the doctor, defining CFS and others. On the federal level the CAA got CFS researchers the opportunity to participate in the $50 million Congressionally Directed Medical Research Program at the Dept of Defense and joined 4 other organizations in the Campaign to End Chronic Pain in Women and others.

‘Inside Voices’

The organization’s ability to work inside the lines and use its ‘inside voices’, while greeted with derision by some, nevertheless produced results. Its successful nomination of Dr. Michael Houghton onto the CFSAC panel introduced a Lasker Award winner to the disorder. In the next year Dr. Houghton would became a Canada 4871-BridgingGroups.jpgResearcher of Excellence and join the newly established La Ka Shing Institute of Virology and begin to study new viruses in diseases, one of which was CFS. Dr. Houghton, who worked at Chiron for decades, stated he was interested in producing an NIH/Drug industry collaboration to produce treatment trials on EBV positive patients. In the next year the CAA nominated more luminaries (Dr. Lipkin, Dr. Holmberg, Dr. Singh) with connections that could conceivably take the disorder far.

The CAA used its ‘inside voices’ to garner federal resources for two Banbury Conferences, to uncover financial irregularities at the CDC program, to open a new source of funding for CFS researchers, and to fight off efforts to get rid of the CFSAC panel. Kim McCleary’s request that a CMS representative join the CFSAC was accepted with alacrity and her idea of CFSAC creating a blueprint for the federal effort on CFS was both startling and intriguing. There didn’t seem to be any post that Dr. Vernon was unwilling to fill as she became an IACFS/ME Board member, member of the BWG and NIH Workshop Steering Committee member and was nominated to be on the CFSAC.

Troubled

The organization had evolved and displayed the ability to change direction repeatedly over the decade yet public perception on the internet was hardly positive. The CAA might not have completely ‘lost the patient community’ as a former Board member suggested, but it had certainly lost a good portion of it. Forum discussions regarding the CAA were noted both for their length and heat. It had few vocal online supporters and showed little interest in trying to change the conversation there.

Strange rumors about it still pervaded online discussions. Two years after it burned its bridges with the CDC it was still believed by some to be in bed with the CDC. PR miscues (XMRV, ‘inside voices’ Peter White) dogged it. An image – of a conservative and out of touch organization – seemed to hover over it. The organization might very well receive an “A” in professionalism but would score decidedly lower in public relations and didn’t seem willing or able to provide the enthusiasm or fire that many patients wanted. A small survey of support group leaders revealed appreciation and dismay; appreciation for the work it did and dismay at the little interaction between them and the CAA.

The CA certainly remained viable. The only support group in the US with significant funding, its $1,000,000 or so budget dwarfed those of the smaller organizations. It survived the economic downturn that decimated some other non-profits by slashing staff but the growth rates of the 1990’s were not repeated in the first decade of 21st century. The glossy Chronicle went the way of many other print publications, replaced by a paper SolveCFS bulletin. Membership levels – which paid for the Chronicle but not much else – tumbled by 2/3rds. The CAA’s chief source of funds – public contributions – fluctuated greatly over the decade but were strong in the last non-recession year – 2008. Still, accounting for inflation, revenues appeared to be down since 2000 and patient groups demanding more aggressive advocacy sprang up in the wake of the XMRV finding.

2000-2010: Conclusions

It had been a turbulent decade for the CFIDS Associaton. It had participated in at least seven major successes; the Media and Provider Education campaign with the CDC, the Research Initiative, the Medscape Physician Education Program, the CFSCC becoming a full fledged federal advisory committee (CFSAC), the Research Initiative, the Webinar program and Dr. Reeve’s ouster.

Some of these carried their own costs….The Media and Provider Education Campaigns did emphasize that ME/CFS was a legitimate and serious disorder but a significant number of people coudn’t get over the CDC toolkit. The Medscape Physician Education was a success but was discontinued after one year. The CAA had played the major role in upgrading the status of the federal advisory committee but that groups effects had been decidedly limited. Uncovering Dr. Reeves financial miscues very probably was key to getting him sacked, as other complaints about him had not registered for years, but the CAA was still too tightly coupled with the CDC in many peoples minds to get credit for that. Only the Research Initiative and the Webinar program were more or less unalloyed successes.

The Future

4875-PastFuture.jpgIn a letter to the community, Kim McCleary stated that “the CFIDS Association’s resources are focused on stimulating research aimed at the early detection, objective diagnosis and effective treatment.” The CAA’s effort to build a collaborative Research Network, devise standardized protocols for researchers and produce a Biobank researchers can use to accelerate their research is arguably the most innovative and significant effort (outside of the XMRV finding) that it or any other ME/CFS organization had engaged in to date.

I personally have no doubt about that vision of the future. The question is whether the CAA will able to get over its past? Can it become the popular leader of the ME/CFS community that it once was? Is it willing and able to do the things it needs to do to get enough of the ME/CFS Community to support its vision of a transformed research community? The answers to those questions will have large ramifications both for the CAA and the ME/CFS Community.

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