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Taking Stock: ME/CFS Advocacy Making Headway

  [ 52 votes ]   [ 1 Comment ]
By Cort Johnson* • • February 23, 2008

The CFIDS Association of America’s Congressional Lobby Day 2007 in Washington, D.C. 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

ME/CFS has actually made a quite a splash for such a controversial, poorly respected, poorly funded disease. Tom Sheridan, the CFIDS Association’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 ME/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 ME/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. [In 1998, CFIDS Association President Kim McCleary asked a CDC official how the $22.7 million Congress had authorized for ME/CFS research was being spent. A federal probe was launched, the CDC’s head ME/CFS researcher Dr. William Reeves “emerged as a whistle-blower,” and it turned out that nearly $13 million of the $22.7 million had been diverted to research in other areas. The CDC was directed to replace the money.]

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 ME/CFS research program was put under oversight, and ME/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 ME/CFS more than they hurt it. They got ME/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 [CDC-sponsored and CFIDS Association implemented] national 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 regard 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 ME/CFS advocates a potential ‘in’ that most diseases do not have - and that ‘in’ could pay great dividends at some point. It gives ME/CFS professionals and advocates the ability to publicly comment and advise the government on a wide variety of governmental programs pertaining to ME/CFS - including 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 be reauthorized.

The CFIDS Association/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 McCleary 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 that 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. [To see the busy schedule of public venues for “The Faces of Chronic Fatigue Syndrome” traveling photo exhibit – next stops Phoenix and Tampa – go to]

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 ME/CFS strikes a lot of people,
  • Studies that show there's a lot of disability in ME/CFS,and
  • That ME/CFS costs the country an enormous amount of money every year (at least $25 billion).

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 ME/CFS. They appear to get it at the program level: Drs. Vivian Pinn and Eleanor Hanna [the two officials in charge of ME/CFS research at the NIH] are well versed in ME/CFS research and have produced an innovative research plan. But the NIH as a whole is still acting as though ME/CFS were a minor disease worth nothing more than pocket change: the kind of money people might give to beggars on the street.

ME/CFS, for instance, has almost double the indirect economic costs of asthma, but receives about 1/80th of the funding (about $4 million a year versus about $300 million a year for asthma).

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

ME/CFS has been struggling for legitimacy for about 20 years. The word at the 2007 Lobby Day was that the 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 that the opinion makers in the medical world are shifting their stance on ME/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 ME/CFS.

“A Watershed Moment”

The CDC/CAA Press Conference that jumpstarted the CFS media campaign in 2006 may turn out to be a watershed moment in the history of ME/CFS. There can’t be many more impactful ways for ME/CFS to gain legitimacy than having the director of the CDC and the Asst. Secretary for 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 ME/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 [Facts about Chronic Fatigue Syndrome] was another foundation stone. ME/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 ME/CFS (“Putting chronic fatigue syndrome’s myths to bed”) featuring Dr. Lucinda Bateman, Dr. Anthony Komaroff, and others.

Another rock was pushed into place with the Mayo Clinic’s report on 'chronic fatigue syndrome'CFS on its website. This report isn't all we would want, but it presents ME/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 in Washington suggested ME/CFS was indeed being viewed differently. During a break at the CFSAC meeting I asked Dr. Patricia Fennell [a chronic illness management consultant and author of The Chronic Illness Workbook] if her peers have reacted differently to ME/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 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 Association was recently able to get a bill passed to educate physicians about ME/CFS - in part because it was able to point to the CDC’s website to show lawmakers that ME/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 ME/CFS are being laid. Most of the physicians on the ground and many researchers haven’t gotten the news about ME/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.

This Will Be a Mainstream Disorder

At some point, ME/CFS patients will be diagnosed quickly, treated compassionately and effectively; and ME/CFS will have a strong research base and (a decent sounding name), etc. ME/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.

* This article is reproduced with permission from Cort Johnson's Phoenix Rising website.Copyright Cort Johnson. Cort is an ME/CFS patient with MCS who offers understandable reports on the latest ME/CFS and FM research via his website and newsletter. Cort will host a Live Q&A in the Community Chat Room on Friday, March 7 from 3 to 4 pm Pacific Time. To find the time in your area, see the World Clock. And if you are new to chat, you can register now. It takes but a moment.

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Article Comments Post a Comment

Thank you, Cort Johnon!
Posted by: frenchtulip
Feb 27, 2008
What a great article! You have an easy-to-follow and extremely effective communication style. Thanks for all the work you are doing to help the CFS community.
Reply Reply
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