Talk about a jolt. Kim McCleary has been the face of the CFIDS Association of America (CAA) for over twenty years. More than anyone else she’s responsible for what the CFIDS Association of America is today, and today, after 22 years at the helm, she announced that she’s leaving the CAA on June 14th as her husband relocates to another job. She’ll stay on as member of the Scientific Advisory Board and the CFIDS Association will begin a nationwide search for a new leader immediately.
Kim was always the consummate professional and the CFIDS Association reflected that. Kim’s goal from the beginning was to get chronic fatigue syndrome (ME/CFS) into the medical mainstream so that it could reap the enormous advantages of that. That meant, above all, the CAA maintaining very high standards, the CAA often working behind the scenes, gaining trust, building confidence and not being the kind of aggressive organization that some people wanted but in your face advocacy was never Kim’s gig. (She did it well, though, when the CAA went after Dr. Reeves).
It’s no surprise that the CAA has done webinar after webinar on the FDA meeting ; this type of event – which places ME/CFS right smack in the middle of same discussion with HIV, breast cancer, Alzheimer’s is what Kim McCleary has been building towards for over 20 years and it’s kind of astounding to me that just as this is happening, she’s leaving.
Smart and Creative
Some people think of the CAA as kind of conservative and in certain ways they have been conservative (and their website looks ancient :)) but I’ve always found them to be quite creative. I cheered when they got the CDC to fund the first media campaign ever for a disease. There were the Scientific symposium series in the early 2,000′s, the CFS Research Review sent to 1,000′s of professionals, the Grassroots Action Center, the Lobby Days, the almost yearly 3-day CFS researcher jam sessions, otherwise known as the Banbury meetings (which they don’t promote for some ungodly reason); the webinar series packed full of information, the Chronic Pain Alliance Collaboration, the first nationwide ME/CFS Biobank and Patient Registry, a dynamic (and successful) research program, the win at the Sanofi Challenge and a soon to be announced partnership to support approval of a drug for ME/CFS.
Chronic fatigue syndrome never made it into the mainstream under Kim McCleary’s watch but it’s getting closer. Former DHHS liason to CFSAC, Dr. Wanda Jones told me the attitudes towards ME/CFS have shifted greatly in the past several years and the recognition given to it recently by the FDA probably reflects that. Kim McCleary and the rest of the ME/CFS community had the misfortune of bucking incredible headwinds at the NIH during her term.
In fact, just about every thing that could go wrong at the NIH did go wrong once the program was shuttled off to the Office of the Director over ten years ago, and was put into the funding structure from hell. The three federally funded CFS research centers were closed, the special grant review panel for CFS consistently lacked CFS experts, the research budget tanked and it took arm-twisting by Senator Reid to get the Institutes to pay up for small grant package they’d agreed to. As a measure of how brutal things were – the budget for ME/CFS research declined even as the NIH budget almost doubled.
The CAA, with their professional DC lobbying team tried but it was to no avail and that has probably hurt Kim’s legacy in some eyes but questionable how well anyone could have done given the brutal environment facing ME/CFS and other similar disorders at the federal level. (FM, interstitial cystitis, TMD, etc., all get horrible funding; FM gets less funding per person than ME/CFS - and that’s after three FDA approved drugs.)
Mention the CAA on the Forums and you were probably going to get a very heated response. The CAA’s takedown of Dr. Reeves, which was one of the most aggressive acts of advocacy I’ve seen in this community, was greeted by one advocate as a cynical move to recapture the chronic fatigue syndrome communities hearts. The hiring of Suzanne Vernon from the CDC, in retrospect, one of Kim’s major accomplishments, even five years later was still being questioned. The CAA was right on XMRV but wrong not to pretend it didn’t have doubts and so got lambasted by the ME/CFS community for their tepid response to the discovery…(Sometimes you can’t win for losing..)
Of course there were stumbles; the CAA’s embrace of the CDC Toolkit being the biggest and most painful one. The CAA’s been knocked for not working with smaller organizations and ‘protecting their brand’ and there’s probably some truth to that. They were late to embrace the ME/CFS label (they finally have). You can also be right in this community and still be wrong – as the CAA was with its conservative and rather tepid (and ultimately correct response to the XMRV finding.
The CAA has got its vociferous critics but its also got lots of supporters - just check out its very popular Facebook page, its ability to rally its supporters to support its probject and its budget; its a unique organization in the ME/CFS community and the fact that its still alive and kicking after twenty-five years of advocating for a controversial disease is pretty darn good. During the recession, the CAA bent where other non-profits broke (National Fibromyalgia Association) and came out of it relatively whole - a real achievement, and then they transitioned to the world of social networking by building the most popular ME/CFS Facebook site.
The CAA has always funded good research but I felt they found their niche with their focus on putting Research1st. Kim McCleary is a science wonk – she can talk research with anyone and I imagine she’ll be reading ME/CFS research papers as long as she’s reading, and my guess is that she loved the new focus. The Light’s gene expression work, the repeat exercise tests, the current EBV work by Glazer, Broderick’s fantastic data mining studies, the exciting brain lactate findings, etc. all were at least partially birthed in the CAA’s research program.
With the Patient Registry and Biobank starting to reap dividends (three studies are underway now – all looking at the same patients through different lens – talk about opportunities for cross-group collaboration), the CAA beginning a partnership to approve a drug for ME/CFS and the Drug Repurposing, microbiome and Logosomix studies ending up these are exciting times for the CAA. I find ironic that she’s leaving right in the midst of all this. I wonder if she does as well.
I wasn’t always happy with the CAA; early on I stopped supporting the organization because of all the fluff they were putting out on the Chronicle (it improved greatly later on) and I, too, wanted more advocacy protests. I would have loved some street protests but they were always doing something interesting particularly on the research end and in the last couple of years, in particular, I’ve found their work very exciting.
On a personal level I always looked forward to meeting with Kim at CFSAC meetings and ME/CFS conferences. Always the professional who rarely responded to criticism, viewers never got a sense of the woman who choked up watching patients give testimony, who had a wicked sense of humor or the hard worker who could talk fluently on virtually any subject on ME/CFS. The CAA was always more than a job for her; her husbands mother, Wilhelmina Jenkins, has had a severe case of ME/CFS for decades; this disorder is part of her family.
Kim McCleary’s Good-bye
I will definitely miss her. .