Taking Stock: Chronic Fatigue Syndrome (ME/CFS) Advocacy by Cort Johnson


Taking Stock: Chronic Fatigue Syndrome (ME/CFS) Advocacy by Cort Johnson

The 2007 Lobby Day opened my eyes to the progress that we have made. There are a lot of negatives, and we tend to dwell on them, but some very positive things have happened. That’s what I left with and that’s what this paper is about.

Building a Foundation: CFS has actually made a quite a splash for such a controversial, poorly respected, poorly funded disease. Tom Sheridan, the CAA’s lobbyist, obviously has some stake in this matter but he was emphatic in stating that no disease with such little support from the power structure has made as big a splash as CFS. While we’ve been watching funding levels decline, we’ve actually made considerable progress in other areas. In fact some of the cornerstones or foundation blocks needed for CFS to succeed have recently been laid. Some of them are listed below.

The CDC Scandal: In some ways the high water mark of CFS advocacy was the CDC funding scandal. That scandal really rocked the CDC’s world; nothing of that sort had ever happened to that respected institution before. By the time it was over the director had resigned and the CFS research program was put under oversight and CFS got an enormous amount of publicity. The scandal wasn’t all good news; it apparently generated a lot of bad blood. Some people there will never forgive Dr. Reeves for the embarrassment his testimony caused. But it was a remarkable achievement.

Ironically one could make the argument that shenanigans of the late 1990s helped CFS more than they hurt it. They got CFS into the news in a big way, we got all the money back that was taken from us, and the program was put under the direction of a vigorous researcher who took advantage of technology not available during the late 1990s. Dr. Reeves may or may not be right in his approach – only time will tell – and he definitely ruffles feathers from time to time, but he is undoubtedly engaged and interested in the subject – something we have not had before. One could also argue that the media campaign would never have taken place without it.

Social Security Ruling. The CDC scandal was the most exciting achievement but other, less obvious but still important, ones have occurred. In 1999 the Social Security Administration produced a special ruling on the requirements for CFS disability. This ruling spells out what the SSA is looking for with regards to CFS and it gives CFS patients a legal document they can use to dispute their rulings if necessary. It is a very important document. This was, again apparently a fairly unusual matter; special rulings on specific diseases are not an everyday occurrence.

CFSAC Committee. The creation of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to advise the Secretary of Health is another resource most diseases do not have. While one can certainly question the effectiveness of the CFSAC this committee does give CFS advocates a potential ‘in’ that most diseases do not have and that ‘in’ could pay great dividends at some point. It gives CFS professionals and advocates the ability to publicly comment and advise the government on a wide variety of governmental programs pertaining to CFS including CFS research at the NIH and CDC, Social Security, educational efforts, the FDA and so on. Even if its potential is not currently being met it is important that it continue. The goal of the 2006 Lobby Day was to ensure that the CFSAC committee was reauthorized.

The CAA/CDC Media Campaign. The media campaign is not just unusual, it’s actually precedent-setting. The CDC has never done a media campaign for any disease before. I asked Kim Mc Cleary how it all got started: did they come to her or did she go to them and if so how did she sell the CDC on something they’d never done before? She said she went to them and she used a study indicating that earlier diagnosis improved outcomes in CFS to argue the CDC should get the word out about CFS.

So kudos to the CAA for its innovative approach in this area. The media campaign has been successful enough that the CDC now has a new problem – other diseases want their own media campaigns. The media campaign’s next stop, by the way, is a two week stint at one of the busiest buildings in the U.S. – Union Station – with 80,000 passers-by a day.

Gaining Legitimacy. If you look at the big picture, we have almost everything we need to get very substantial increases in funding. We have population studies that show CFS strikes a lot of people, studies that show there’s alot of disability in CFS, that CFS costs the country an enormous amount of money every year (at least 25 billion dollars). These are real accomplishments; it’s surprising how many diseases do not have this kind of strong prevalence and economic data.

Despite these studies, the upper levels of the NIH still don’t ‘get it’ about CFS. They appear to get it at the program level; Drs. Pinn and Hanna are well versed in CFS research and have produced an innovative research plan. But the NIH as a whole is still acting as though CFS were a minor disease worth nothing more than pocket change: the kind of money people might give to beggars on the street. CFS, for instance, has almost double the indirect economic costs of asthma but receives about 1/80th of the funding (about 4 million/year versus about 300 million dollars a year).

The only way officials with any sense of integrity can allow something like that to happen is for them to tell themselves that CFS isn’t really real. The good news is that it is getting and harder for them to do that. Gaining legitimization is one area we have made great strides in. Five years ago it was not that hard for someone working at the NIH to dismiss CFS; today it is pretty hard to do so; tomorrow, hopefully, it will be impossible.

CFS has been struggling for legitimacy for about 20 years. The word at this Lobby Day was that that struggle is just about over. Tom Sheridan, the CAA’s lobbyist came in and basically said, “This is about closing the door on that issue and moving on”. The fact is is that the opinion makers in the medical world are shifting their stance on CFS. Evidence of this includes public acknowledgments by high ranking officials, official websites that legitimize the disease and support by respected medical organizations. The big stakeholders are beginning to support CFS.

The CDC/CAA Press Conference that jumpstarted the CFS media campaign may turn out to be a watershed moment in the history of CFS. There can’t be many more impactful ways for CFS to gain legitimacy than having the director of the CDC and the Asst. Secretary of Health stand up and announce to the world that CFS is a real and serious disease. The fact that this came just five or six years after the CDC was taken to the mat by Congress for lying about its misuse of CFS funds only helped matters; to go from chief skeptic to promoter in this amount of time is little short of amazing.

The short report on CFS by Research America was another foundation stone. CFS is only the 14th disease this highly respected organization has produced a fact sheet on. Another brick was laid by the American College of Physicians (with their 120,000 members) in their detailed overview of CFS including Dr. Bateman, Dr. Komaroff and others. Another rock was pushed into place with the Mayo Clinic’s report on CFS on its website. This report isn’t all we would want but it presents CFS as a legitimate disease. The Mayo Clinic, which is often mentioned in the same breath as the NIH and the CDC, is an important arbiter of medical opinion.

Several encounters I had over the week suggested CFS was indeed being viewed differently. During a break at the CFSAC meeting I asked Dr. Fennell if her peers have reacted differently to CFS over time. She said there’d been a remarkable change in the past five years or so. Most people in her field (behavioral sciences) used to think that CFS patients were traumatized and that was causing CFS, now they think something in CFS is causing people to be ‘traumatized’. That shift – from a psychological orientation to a physiological one – is a major one.

The husband of one of our group members had recently attended a short class in medical school in which CFS was treated as a nothing more than a puzzling but entirely legitimate disease. The fact that CFS both a) made it into a class in medical school and b) was treated fairly is somewhat astonishing. The Vermont CFIDS organization was recently able to get a bill passed to educate physicians about CFS in part because it was able to point to the CDC’s website to show lawmakers that CFS was, indeed, a legitimate disease. An earlier effort failed because they didn’t have a respected source they could utilize.

It is clear that the foundations for the widespread legitimization of CFS are being laid. Most of the physicians on the ground and many researchers haven’t gotten the news about CFS yet but it appears that the major stakeholders and opinion makers in the medical field have. It will take time for ‘the message’ to filter up or down but eventually it will.

There is a sense that we’re starting to get a bit of a tailwind behind us. If we keep speaking out and supporting our local and national organizations and keep getting involved, we may be able to translate these results into meaningful activity at the research level.

At some point, CFS patients will be diagnosed quickly, treated compassionately and effectively and CFS will have a strong research base and (a decent sounding name), etc. CFS will become a mainstream disorder that has ‘made it’ in the medical world and will be able, like other mainstream diseases, to reap the very considerable benefits of having done that.



Share this!