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 (Putting
CFS's Myths to Bed)
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.
7/27/07